Things were going well then BANG

Not self pity at all, you’ve had a huge blow when you thought you had a defined plan. I’m sick to death of chemo but take what is offered as I’m not ready to leave my family yet. The Whipple is a massive operation which does take a long while to recover from. Enjoy your special days with your wife and make them count 

Thankyou Lady Aga for your kind words and I have every intention of doing as much as I possibly can to prolong the time I have with my wife, 4 children and 10 grandchildren I’m certainly not going to give up it just feels so raw at the moment as have only just been told but I also understand that there are many of us going through the same thing if not worse and my heart goes out to every single one of them.

Just wanted to send you a big hug and you keep on enjoying life with your family. I lost my husband in April after a 1 year battle with PC he was 60. I just wanted to say make sure you speak with your oncologist about taking creon or similar medication to help you digest your food as it helps Your body to absorb the nutrients in your food. I believe my husband should have been taking this drug a lot earlier than he did and this would have helped him stay stronger for longer while he had a decent appetite. Take care and all the best to you x Here if you need anyone to talk to.

Hi Pinky Thankyou so much for your message and I’m so sorry to hear about the loss of your husband.I have been taking creon for a while now and they do help so I can’t understand why this wasn’t offered to your husband earlier.I am trying to enjoy life and take each day as it comes which is what everybody says to do but it is really hard some days as I just look at my lovely wife and kids and grandkids and think it’s just not fair that I am going to miss having so many more years with them.I understand that a lot of other people are just as bad off as me and some are worse but we all have to deal with our own situation and it’s hard when my wife says you are stil here so let’s enjoy the time I can’t explain to her how it’s different being the one who has been told he’s going to die sooner rather than later.anyway that’s enough for now as I understand you are going through your own personal hell and I’m so grateful you reached out to me as it is hard to talk to the people close to me about how I feel.I hope you are as ok as you can be and I look forward to hearing from you again I hope.xx

Hi pinky,

My mum was diagnosed with PC about 4 months ago. Unfortunately due to her weight and a low BMI the whipple procedure was ruled our. She insisted on trying chemo Unfortunately 3 days in she picked up an infection and treatment was put on hold. Yesterday she restarted chemo and has been told if she gets any infections then treatment will stop and not restarted at a later date.  My fear is her weight and although her appetite has not been too bad she is not gaining weight. My question is her creon am I giving her enough.  Can you give me some advice as I'm getting different answers from different doctors. 

Thanks 

Turkish delight 

Hi Turkish Delight my husband was losing weight during his chemo but he was t given creon until a couple of months after he had failed surgery when they found the cancer had spread to his peritoneal. He was then told nothing could be done for him other than palliative chemo in Dec 2021. Once he was out of hospital & recovering at home his appetite was quite good and I believe if he’d been taking creon for a few months prior to the surgery he would have been stronger for longer. He was already on the decline when they prescribed it. 

it is very difficult for PC patients to put weight on but if weight can be maintained & they can continue to eat & enjoy food it is much better to help keep their strength up. I’m afraid my husband declined quite quickly once he lost his appetite. He was given Fortisip supplement drinks which he hated. Let you mum have anything she fancies if she can eat. My husband would say he would quite like this or fancied that and I would race to the shops to buy the ingredients and then by the time I’d prepared & put it in front of him (very small portions) he couldn’t bring himself to eat a mouthful. I’d be so upset about it & he would feel really ungrateful but it was the nature of the beast I’m afraid. When you love someone who’s so very Ill you just want to make them comfortable & feed them up and it breaks you to see them decline. 
 I’m afraid I’m no expert on dosage & the amount of medication you are giving to your mum. I would discuss with GP but please ask for clarification from the dr who prescribes it if you have any issues. If I could go back 12 months I would demand that my husband be given better care and creon months sooner!!!
Wishing you strength at this awful time 

Hi pinky 

I can absolutely relate,  and want to give mum anything she fancy, very much like your husband she really can't stand the fortisip and I am always trying to get her to drink them as well as food. I had to take over portion control as my dad piled food on her plate, and said just eat what you can but I could see how it was putting her off. I looked at her again today pinky and it's breaking my heart to me it looks like she is still loosing weight and that's why I asked about the creon. I would be ok if we could maintain weight as she is now day 4 into treatment.  By day 3 the first time round she was admitted to hospital and very poorly.  I know still early days but apart from being tired , she's not had any other side effects. In your experience will the chemo get easier the longer she's on it. Or what else should I expect.  I only just had a conversation about trying to change her priorities as at the moment she's trying to carry on as normal and right now that's starting the day with housework  so she really has little energy left for anything else we laughed together as she realised in the grand scheme of things and my mum doesn't swear but said balls to the housework...any advice you can give me is much appreciated 

Turkishdelight 

Hi Turkish Delight. We were told my husband could have up to 30 Creon a day but I know we've gone over that a few times. The point is you can't "overdose" on it because it's a natural enzyme, not a chemical drug. Also, my husband supplements his meals with Ensure Compact drinks which are quite palatable and, as the name suggests, the portion in each is quite small. Ask your GP for some. Hope this helps.

I would get a 2nd opinion. There are surgeons that specialize in difficult Whipple cases and that could offer you better guidance. Don't give up or give in. I've read about many fellow PC warriors with your situation that are now doing well. I was stage 4 and got the Whipple 7 weeks ago. You've probably heard "no one performs a Whipple on stage IV." Not true. 

Hi there Maccaman, how are you doing now?