Whipple procedure and chemo.

Hi jackfrost, my partner had a whipples last November and refused chemo. I feel I am now playing the waiting game, he has his 3 month oncologist meeting  early May, he refuses to let me go.to them. Hope your mum feels better soon, it's a hard journey which ever way you travel, but at least she is fighting x

Hi, yeah I should imagine it must be difficult for you if he’s not letting you be apart of it. How come he refused chemo?  I’m no doctor but anything that could help! I think if my mum didn’t have chemo she’d feel a hell of a lot better than she does currently, and it must be hard to put yourself through that after having such an awful operation, but Anything which is there to help is worth the rough to hopefully get to the smooth if you know what I mean. My thoughts are with you and your partner. Fingers crossed for you x 

Hi, he said he felt that as there was not 100% chance of chemo being successful he would rather  take his chance and live his life a cording to his rules. He is very good at cherry picking information he wants to hear or agrees with and ignoring the rest. As I haven't spoken to the doctors I can't really say any more, but obviously feel I am playing the waiting game. He has his oncologist appointment soon so we will see, or not  if he  keeps things to himself. I think I would have taken the chemo, and bizarrely am pretty sure he would have encouragede to. I think also during his hospital stays he saw a lot of long term chronically ill people and he always said that would not be for him. He gets annoyed if you push him. Thank you for caringx

I can relate in way what he feels. Seems like he’s got an old school approach. In my mind if it gives you a better chance then that’s all I’d need to hear. It must be hard for you not feeling involved with the info from the doctors, however one thing I have learnt with this journey is EVERYONE is differnt. And not one person in the same. There’s never a right or wrong way to do things. And maybe because chemos not his choice doesn’t mean it’s a waiting game. I can totally understand what you mean by that! However he could have a long happy life! It’s easy to let your mind take over that’s what I’ve found. Which is why it’s so amazing to hear positive experiences which is why I’ve come on here really because I haven’t anyone to talk too.. and what’s better than talking to people in the same boat?! X 

Hi Jackfrost

Just joining the chat. Since you mention that your Mum is having chemo every two weeks I guess it’s Folfirinox which is a hard regime but the medics should be able to make the experience more comfortable.

i totally agree that we are all different which means that some folk will refuse chemo. I’m on this site because my husband had pancreatic cancer. He did have adjuvant chemo. I have had breast cancer and declined chemo. So we all make choices.

The key thing I have learned is that the most important person in all this is the patient and supporting them in their wishes is key.

i hope your Mum feels a bit better over the next few days.

Squeaky

Jackfrost

I meant to say that if you haven’t already done so a look at the Pancreatic Cancer UK site is worthwhile. Also talking to their nurses might be helpful.

Squeaky

Nice to meet you and thanks for the reply! Firstly I’m sorry about your husband and your experiences.. but I’m happy to have your kind worlds and advice! Yeah that’s what she is having! Which she’s struggling with in all honesty. I personally don’t think she recovered from her op before she went back to chemo.. She’s suffering with Dhiaroea and sickness, and struggles to eat a lot , I’m hoping it gets better rather than gets worse because we have 10 rounds left! I can’t imagine it getting better though. I guess the biggest thing for me is the unknown! And obviously reading about the extremely low survival rates with pancreatic cancer and your husband having chemo and it returning fairly quick is really really sad. It’s difficult for me to stay Forward thinking and sometimes I’m my own worst enemy! But I appriciate eveyone is differnt as I keep saying which can only mean one thing- go with the flow basically, yes I have read the pancreatic website and have seen 12year plus survival stories! So I know there’s always a way, it’s not all doom and gloom..  I’ve tried to stop googling things to avoid terrible outcomes in a selfish way which maybe me being naive or just hiding from things I’m not sure but thanks for the message it means a lot x 

Hi Jackfrost

From being on here and other forums I know that reaction to chemo is very unpredictable. Your Mum may well get better reactions in due course. But do get her to talk to the nurses at the oncology ward because they should be able to change her meds to combat sickness and diarrhoea. I take it she is using Creon with food.

Try to encourage eating little and often but don’t stress too much if she can’t manage food.

and go with th flow as you say!

Squeaky

Yeah you’ve got it! She has creon tablets, they fiddled around with her dosage from the first time as they said I could of been a bit high, so fingers crossed. It’s hard to get in my mind what to expect.. and the actually truth I think to that answer Is not one person truly knows what that is.. so everyday is a blessing and we have to go with it, and hope for good outcomes. Thanks for taking your time to hear me and my problems squeaky... something so small can change someone’s weekend. So thank you x

Jackfrost 

Just a thought on Creon. As you know it’s not a medication but an enzyme to help digest. I think that most people who use it would say that the experts on it are those using it. You can’t take too much. Your Mum can experiment to see how she does best on it.

Squeaky