Discussion Board Forums Introductions! First post

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  • #65304
    lainy
    Participant

    Dear TryingToHelp, welcome to our remarkable family but sorry you had to find us. Not everyone gets that horrible pain but my husband did and the only way we kept it under control was with Morphine. They gave him a long acting 12 hour dose 2 X a day with an hourly dose for breakthrough pain.
    As for the doctor, if you feel in any way uncomfortable, we always advise 2nd and 3rd opinions. Where is your husband being treated? It is very important with a CC DX to be at a hospital and with a Doctor who has treated more then a few CC patients. Pain can be controlled but you have to hit on just the right RX for him as everyone is different. IF you feel he really needs to go to ER then you need to make that decision. I know it’s hard, very hard but he needs to listen to you! If the pain is not under control it uses up valuable energy that he needs. Have you given any thought or talked to the ONC about Hospice? It does not mean the end as they come out even up to a year ahead but they sure do help a lot in every way. Glad you finally joined in as this is truly the best place to be….if you have to. Please keep us updated on your husband as we truly care.

    #7444
    tryingtohelp
    Member

    Hello all
    I’ve been reading the posts for a while and finally joined it. My husband has been diagnosed with stage IV cc/possibly pancreatic cancer on 10/26/11. He has also spots on liver, tail of pancreas, spots on a spleen and grapefruit size omentum mass. They only biopsied omentum mass and determined it was metastasized, with primary most likely in bile duct. He had gemzar/cisplatin for 6 months, then xeloda, then folfirinox. With folfirinox – Ca19.9 was going up, then down, but last result – went up again. During last 11 months his CA19.9 was as high as 24200, as low as 2290 back in March and now 12350. I have read in doctors’ notes that folfirinox was the last attempt to slow cancer down. We haven’t talked to his doctor since we found out about the cancer marker and I’m afraid he is not going to offer anything else. Just wondering if anybody had similar experience and what else could be available. I’m guessing doctor will order another CT scan, since his last one was back in May. My husband just had chemo (folfirinox) on Monday and has been having a lot of pain since yesterday. He is on fentanyl patch 100 mcg and after I called his doctor’s nurse – doctor doubled it to 200 mcg as of today. So far it’s not helping, even with additional Oxycodone and lortab. Husband refuses to go to ER. He has been also getting TPN for the last month, since he is pretty much stopped eating and barely drinking. Any advice is appreciated!

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