Advice again please!

[Daddysgirl71]

Hi everyone,

Dad was diagnosed in April this year and had his op in June, as far as the consultant was concerned all the cancer had been taken but biopsy showed a slight spread to some lymph nodes. He was to have 18 courses of chemo in 3 wk blocks. He has gone every week to this getting thinner and thinner and weaker and weaker with no help and hardly any medical input..His G.P has never treated anyone with it before?? It wasn't till he had an appointment with his consultant that did the whipples last week and heard him gasp at the state of my dad that anyone has taken any notice! They immediately stopped his chemo( just 3 to go) and referred him to a nutritionist . We feel it's awful that he has been going week after week for chemo and no one has noticed his decline... He has gone from nearly 14 st 7 to 8st 9 since diagnosis and is so weak! I guess I'm just on to ask has any one else been met with such indifference and poor after care? Also his problem now is crippling heartburn... Any advice on what causes, how to cure this would be fab!!!

Thanks for reading my rant!

X

[HelenF]

Hi Daddy's girl

You say your Dad had an operation in April what was the objective of this, to remove the tumour in his pancreas? If so how did his whipples come up after - sorry I dont understand what operation he had and when.

My Dad was too far advanced for any operation when he was diagnosed, he had a tumour in his pancreas and secondaries in his liver. He too went from around 11stone to 8st stone 6 and from what I have learnt on this on these pages and all the help from my cyber friends, this is just part of the journey with pancreatic cancer, he did not manage to gain any weight back.

Why have they stopped chemo? Is your Dad on any of the nution drinks ensure, fortisip etc - if he can tolerate them then they will help him get essential nutrients and vitamins. Is he on Creon - this is a digestive enzyme that helps digest and breakdown food because the pancreas isnt working properly. It was an amazing help to my Dad. How is his pain - is it under control?

Sorry for all the questions just want to provide as much help based on my experience as I can. Jeni from PC is also amazing along with all the other people that use this forum.

Thinking of you , its a worrying and difficult time

Helen x

[Daddysgirl71]

Dear Helen,

Thanks so much for replying.. Dad had a successful whipples operation removing all of his cancer, sorry for not making that clear. He is now taking these supplement drinks , hoping to build his strength up a bit.

As for the Creon.. Yes he has been taking them since the beginning .. Hating them but taking them! He seems to think they might be causing the indigestion? Chemo has been stopped as they told us as he had completed 15 out of 18 sessions it's prob done as much good as its going to.. It's a guessing game , supposedly, how many sessions to give? As he was so weak the hospital decided it was doing more harm than good and that he was very strong to last as long as most people pull out of chemo before the course ends due to it being so brutal!

He is fighting this horrible disease with such bravery and I'm pretty optimistic that he is one of the lucky guys... I just can't wait to start seeing him getting stronger and enjoying life again!

[PCUK Nurse Jeni]

Hi there,

Sorry to hear about your dad, and the lack of concern he has had so far.

It is quite acceptable for chemotherapy to be stopped before the whole course is completed. It sounds like there are many issues which are affecting your dad, some of which will be due to the chemo, and others not. The chemotherapy given post Whipples is not usually "brutal". It is given very safely and effectively in the older population very frequently, and causes some manageable side effects. Also, before each cycle commences, your dad should have been assessed by the oncologist to check his fitness to have another cycle. At these check ups, did your dad speak about his side effects, and if so, what was done to correct them? These are questions you can take up with the care team, as it is important to find out why nothing was done about his weight loss, etc..., all this time. He will also have been seen regularly by chemotherapy nurses -again, did any of these professionals communicate their concern to the doctors? If so, what action was taken?

It is very unlikely that creon is causing heartburn. There are few side effects from creon, and it is harmless if too much is taken. Heartburn could be as a result of chemo. Is he on any medication for this? If not, OMEPRAZOLE or LANZOPRAZOLE are very good for this, and very effective. The gp can prescribe these. Regarding his weight loss, he may not be taking enough creon. Quite large doses are often needed, and it is usual that people under-dose rather than overdose. The dietician will be able to discuss this with your dad. Regarding energy levels, then he could have a course of steroids to boost him, and this will also increase his appetite by making him hungry. If he goes on these (dexamethasone), then it is important that he is on the above medication for the heartburn to protect his stomach from the effects of the steroids also.

Hope this is helpful, but if you would like further information or have other questions, please email us at the support email address.

Kind regards,

Jeni.