Recurrence after whipple...chemotherapy with folfirinox

Hello all. This is my first post in here i found this forum online which i think is really helpful for people fighting Pancreatic Cancer. I will shere my story with you.. My dad was diagnosed with Pancreatic Cancer in May 2015. At that time he was a canditate for a surgery so in July 2015 he has a whipple procedure followed by chemotherapy which didnt give him any problems. We had a wonderful year without any symptoms until September 2016 which he started complaining about back pain. We contacted his oncologist had a CT scan and the result showed recurrence of Panceratic Cancer with no metastasis in any other organ. The doctor suggested chemotherapy with folfirinox. We arranged an appointment to start but the day before we started he became yellow so he had jaundice. They inserted two stends. We lost two months due to jaundice and started chemotherapy at the end of December 2016. The problem now is that he is very weak lost a lot of weight. He gets confused at times . He doesnt Sleep in his bed and spends most of the night sleeping on a chair which he says he finds more comfortable. I think that he is also depressed because of his situation. Does anyone else had an experience of fatigue after the first session of folfirinox? Does it get any better or worse after more treatments? Any ideas on how to gain weight ?

Thank you very much

Hi Nelly...sorry to hear about your Dad's recurrance...it's all too common unfortunately.

My husband had the whipple op and did really well for a while, but his cancer came back in lymph nodes and then quickly spread around his abdomen, liver and lungs. He had 24 cycles of folfirinox and tolerated it well with some tiredness, neuropathy and reduced appetite.

With regards to weight gain...loads of high calorie foods, full fat milk, cream, ice cream, puddings etc, but try and get the GP to prescribe scandishakes...they'll try and fob you off with fortisip, but they taste bad...the scandishakes are more like a proper milkshake. Also see if you can get some procal powder...you just add spoonfuls of it to any food or drink (except juice and water) and it adds loads of calories and extra protein without changing the taste or texture of anything...I found these to be the most beneficial as adding cream to stuff does make it claggy. The other thing I did was make fruit and veg smoothies...get yourself a nutri ninja or nutribullet type thing and research juicing. Mango, pineapple, banana, spinach and almond milk is tasty, an anti-oxidant and immune boosting...you can also heap a spoonful of coconut oil (loads of cancer fighting benefits) or peanut butter in to boost calories...Nige had these every day throughout chemo and I'm sure it helped keeping his blood levels up.

Nige also couldn't get comfy lying down, but he had a huge incisional hernia from the surgery and towards the end suffered horribly with ascites...he propped himself up in bed with various pillows, but it was never right...we got a hospital bed for him, but he didnt use ut much before he died.

Hopefully, if its still contained within the pancreas, the chemo will help...folfirinox shrunk and actually started to kill off Nige's pancreatic tumour...just unfortunate that it had got into the lymph system.

Hope that helps...I'm on my tablet at the minute, so apologise for any spelling errors!

Vx

Hi Nelly,

Welcome to the forum but I'm very sorry that you find yourself here. I'm sure you'll find it a very supportive place.

Sadly it's pretty common for people who have have a Whipple to get a recurrence but it's no wonder that your Dad is finding the situation hard to cope with and he could be clinically depressed. Apparently PC does make people prone to depression so anti-depressants may help.

As well as Veema's great advice, there's a PCUK information sheet about a build-up diet here:

http://www.pancreaticcancer.org.uk/information-and-support/diet-and-pancreatic-cancer/diet-tips/tips-for-a-build-up-diet/

You ask about Folfirinox and fatigue - yes, it's a common side-effect. From my reading of others' experiences, I'd say that some people are completely knocked out for the first few treatments then seem to get used to it and things improve, but for others there's a cumulative effect and treatments get harder and harder. There's no way of telling which category your Dad will be in. The jaundice and poor sleep on the chair can't have helped, and hopefully once the fofirinox starts working it will shrink the tumour enough to alleviate his pain and then he can get back to sleeping in his bed and getting a more restful nights sleep.

The nurses on the support line here offer fantastic advice and I wouldn't hesitate to get in touch with them - you'll get great advice from the forum members here too but none of us are medics.

Wishing you and your Dad all the very best

W&M xx

Hi Veema

Thank you so much for your reply is very good to hear other peoples' experiences. We will try all the things

That you suggested. It is really difficult here we live in Cyprus and is very difficult to communicate with the

Medical team and are always busy and dont really give us the chance to ask questions so we end up going

To private hospitals and thank god i have disovered this group which is really helpful.

I am really sorry for your loss may god give you the strength at this difficult time thank you again for your advise xx

Thank you wife and mum for taking your time to answer

Just one more question to all of you as far as puddings ice cream and all other sugary things i read that sugar is the

Biggest 'enemy' of tumors as in a way it feeds them and make them grow. Do you know anything about that ?

Thanx again xx

Good question Nelly, but no easy answer. Opinion seems to be divided but in the UK the NHS advice is that you should encourage the patient to eat whatever is palatable even if it's high in sugar.

My own view (I have no medical qualifications but I've done a lot of reading about the disease) is that if weight loss is not extreme, or if the patient was overweight to start with, its best to avoid unhealthy foods and instead focus on high protein and nutritious foods. This is backed up here:

Thank you so much

That's the benefit of things like the procal powders...it's calories and protein, without the high sugars.

If you struggle to get any of the things mentioned, you can buy them, they are pricey, but available.

Nige was encouraged to eat whatever he fancied...if all he wanted was cereal, he ate cereal. Full fat milk kept him going I think...he'd drink gallons of the stuff.

Vx

Regarding high calorie supplements. I was told by the dietician that milk powder was just as good and cheaper ( the whole milk powder is best and made by Nestles. I buy mine at Tesco).

Dear Nelly,

So sorry that there has been a re-occurance I'm sure your Dad must be feeling very low.

Fatigue is a major symptom of nearly all late stage cancers so it may not necessarily be the chemo although that too can debilitate the patient. Has your Dad spoken to anyone about his low mood both from a physical and emotional point of view, his GP perhaps? Are you involved with a palliative care team or a hospice? These people have huge experience in dealing with symptoms of Bothe the cancer and the treatments and when the time comes, with helping people come to terms with their life limiting condition. There are medications for his low mood which can really help as well as advice on diet, pain management and a whole host of coping and caring issues. I am not trying to write your Dad off, I am trying to say that sometimes the treatments are as bad as the disease and if and when the times comes that he has had enough, the hospice or palliative care team are also there to make sure he can be comfortable and reassure him of that, I would strongly advise developing a relationship with them before it becomes a necessity as they have some really good ideas and tips.

My husband was not able to rest easily and you may find that a hospital bed which can be fully adjusted to suit and which can prevent bed sores may give him some comfort. My husband preferred his own bed but with a big array of pillows so that no pressure was on his tummy.

Good luck and do let us know how things are going, someone is always about on here if you feel like posting xxxx