What now

Hello George 1823

I am sorry to hear of your husband’s experience. This forum is quite quiet just now but there may be someone around with their experience. It does happen that the Whipple cannot be completed because of the location of the tumour.

i found the nurses on the Pancreatic Cancer UK website very helpful and they may be able to explain more to you.

Squeaky

Hi George,

I am sorry to hear about your husband. This happened to my mum as well who is 57 when they done the operation they found that the tumour was wrapped round the portal vein so they closed her up and suggested chemo to try and shrink it and then re assess after chemo. Mum had to have a stent put in as she was had jaundice.

Mum has started chemo she’s just had her second cycle of the furry fox she’s doing so well I’m so proud of her.

After mum recovered from the operation she went to see the oncologist at our local hospital who said chemo would not benefit mum and refuse to give her chemo. We paid for a second opinion which was the best thing we could do as this oncologist is DR Hope and is fighting this along side us. I have read that some oncologist don’t know how to deal with this cancer and just see you as dead man walking.

i hope you husband is recovering well.

Hope this helps where is your husbands tumour?

xxx

My husband is starting to recover now . The tumour is in the head of pancreas what has caused the problem is he had really bad pancreatitis caused from inserting the stent. They were unable to operate because of this. Six months down the line they tried but didn’t succeed, they have said it hasn’t spread but the tumour has grown. He had a bypass operation. , this was three weeks ago. We are now waiting to seen the oncologist. My husband and I are taking each step as it comes ,focusing on getting him over the operation ready for our next step. 

Thank you so much for talking to me .xx

They didn’t do mums stent after the operation as they didn’t want to risk her getting pancreatitis before operation but the tumour had already grown by then.

Is your husband on Creon these help your body break down your food as the head of the pancreas creates enzymes but due to the tumour being there the body doesn’t create another enzymes.

Mum was 10 stone before diagnosis but started to lose weight fast when she was in hospital she went down to 7 stone 4 we got a dietician and they recommended creon as they will help the body absorb all the nutrients from the food mum has now gone up to 7 stone 10 now and maintaining her weight even on chemo.

Glad your husband is on the road to recovery it took mum a good 6-8 weeks to recover even though they couldn’t complete the surgery it’s still a major operation.

i have been doing a lot of research if I can be any help or just someone to talk it’s such a rollercoaster just trying to stay strong for my mum and I know you be doing the same for your husband

the people on these forums are so kind and a big support the nurses on pancreatic cancer website are superb as well xxx 

My husband is on creon  he started this about five months ago. His weight is now down to 82kg he lost 1.2 kg this week , he also takes Fortisip twice daily , he has lost his appetite since coming out of hospital, but we are trying with his fresh fish , chicken etc. 
Not sure how long we will wait for our oncology appointment, my husband feels really down at the moment, he doesn’t like talking about the illness and doesn’t even want to look at the scars from operation we are both very private people. I’m trying to be positive and trying to get him feeling positive again xx

It’s so hard for them to maintain their weight when we spoke to the dietician they advised us high calorie mum has never got an appetite either if we do something like mash we add cream butter to try and get calories in her I chase the hospital about the oncology appointment as they don’t seem to rush at least then you will know what the next plan of action also I know hospitals and local hospices can other loads of support someone to talk to or they do spa days cream tea also ask your gp if they can referrer you to a dietician as they will be able to help with your husband weight when mum has her chemo they have a dietician come round to see how they doing it’s a good idea as it’s not another hospital appointment you got to do to xxx

Hi my husband has had the exact same problem as your husband they could not do the Whipple operation because it was around the portal vein. He had a bypass op which he recovered well from. Unfortunately he could not eat anything due to terrible sickness even after they fitted a stent. 
my husband waited 8 weeks before chemo unfortunately the cancer had started to spread. 
my advice would be to keep pushing for chemo to start ASAP as long he is well enough. Ask to see dieticians to get pro cal shots and ensure shakes to mix with ice cream to get a high calorie intake in. This is a terrible cancer that needs to be highlighted and made more aware of. 
my husband wouldn’t talk to me about it either from what I’ve heard it’s quite common to act this way. 
Good luck on your journey. 

Sorry to hear about your husband Alea has he started treatment I totally agree with more awareness of this dreadful cancer we are doing an awareness day at our local hospital next month giving out leaflets and doing fundraisers to raise funds for the pancreatic cancer charity mum had to wait 9 weeks to start chemo as the first oncologist refused to offer her chemo so we had to get her a second opinion I think the attitude of some oncologist towards this disease is shocking xxx

Hi yes my husband started treatment on August 19th it’s was suppose to be 3 times a month then a weeks break then start again for 6 months and so on. 
The doctors are playing with patients lives and they experiment with treatment and open people up to say it’s around the vein etc. 
with the technology now there should be no mistakes and they should know exactly what is going on before they start operating. Good luck with your mum do lots of research and fight for all the treatments. 

Sorry forgot to say well done for raising awareness at your local hospital we need to raise awareness of this terrible cancer

i have done a fun run to raise awareness and I have a just giving page for pancreatic cancer research that  stands at just  £4073. Good luck