It can be difficult to make contact with other people who have rare conditions like your Dad. I wonder if you've seen the Pancreatic Cancer UK website? They also have an online forum and it might be thtat they have members who have first hand experience of this kind of illness.
You're more than welcome to post here at Cancer Chat and we - and of course our lovely members - will do our best to support you.
Hi kristenjo, I'm new to all this but just wanted to let you know, my husband was diagnosed with Glucagonoma in December. It's scary being diagnosed with something so rare, it's difficult to find out much about the condition or find people who are going through the same. My husband has just had the first of the planned monthly injections. What treatment is your dad having?
He is also having the injections (sandostatin i believe it's called). He started with going once every month but he was still having so much pain so they changed it to every 3 weeks. He meets with the doctor every 3 months to see if the cancer is stable - so far so good! :)
He does have a lot of pain though - does your husband have this? Is there anything that helps him?
Hi kristenjo, my husband was diagnosed after he suffered a perforated bowel. After the operation he was given morphine, which although now on a reduced dose, he still takes. He has pain in a morning until he has taken his medication and he is always ready for the evening dose, In between he's mostly ok. Where is he being treated ? We are in Swansea, we are being seen after 6 months, which I worry is too long! Was your dad able to have surgery? I'm not sure I can give you any advice on coping, we just look to tomorrow and the next day and the next..... We make plans and we're very positive Our daughter is 26, she worries a lot so I understand your concerns. Always happy to chat.
My dad isn't a candidate for surgery because of the size and location of the tumors. They have metastisized from his pancreas to his liver and lungs. He takes prescription strength aleve for day time pain and either vicodin or tramadol for night time pain. He has many days that he is very symptomatic including diarrhea, flushing and abdominal pain. He is being treated at the U of M in Minneapolis, MN. We go every 3 months for repeat scans, labs and to see the oncologist. We just try to keep a postitive attitude and like you said look to the days ahead!!
Unfortunately my husband is inoperable too, he also has liver mets. it sounds as though youre getting good regular treatment so I think it's a case of doing as you're told by the oncologist, being informed and most of all being positive. It sounds as though you're doing great, just being there for your dad is what's important, but you also need to be kind to yourself too. Do go out with your friends, I'm sure your dad wants you to have some fun, he'll feel better if he knows you can relax from time to time.
