My Mom’s journey - advice appreciated

[JMorphy]

My 80 year old mom was diagnosed July 4, 2018 with pancreatic cancer after suffering some abdominal pain and vomiting. According to the CT at the end of June, the tumour, on the head of the pancreas was about 4 cm at that time, and there was no evidence of metastasis. The doctors gave a prognosis of 3-6 months. A bile duct stent was put in about 2 weeks after diagnosis, as she had become quite jaundiced. My mom weighed 90 lbs when she was diagnosed and her weight has remained stable, although I have no idea where it would come from if she lost any more weight! She had been living independently on her own and we moved her in with me when she was diagnosed. Everything has been going fairly well, with good pain management (she gets pain in her lower back and lower right quadrant of her abdomen). No nausea or other symptoms other than daily acid reflux, which she never has had before in her life. She takes 4 or 5 different meds for the reflux and they barely manage to ease it. She has very slowly become weaker, but she certainly doesn’t tire - up at 4 or 5 AM and bed at 10 or 11 at night. I have a hard time keeping up with her and I am healthy! She has opted for no treatment other than palliative measures. She eats very little, about 4 tablespoons of food 2 or 3 times a day.

She went for 3 days with no bowel movements and her reflux became very severe, refluxing every few minutes all day long. The meds did nothing to help. Yesterday, she had another CT scan done and there is still no evidence of metastasis and the tumour is essentially unchanged in size. This said, apparently her stomach was “largely distended with a beaking configuration at the pylorus which is just inferior to the pancreatic lesion ....worrisome for a gastric outlet obstruction.” We are currently waiting to hear from the doctor about this. Does anyone have any experience with this and is it something a frail 80 year old can get through? Thank you for any advice! Jennifer

[Michaela1]

Are you on about her having the whipple operation? This is a huge operation, that's pretty much all I know, I think if she is only opting for palliative care at the moment she would be willing to go down that route. What has her oncologist/surgeon suggested? I am afraid i am all quite new to this too, but am to far gone for whipple...but if I could I would, but then I'm only 47!

I am sure you will get more advice on here, But I would definitely ring the pcuk nurses available on this site as they are a fountain of knowledge! Take care of yourself too.

Michaela x

[JMorphy]

No, not the Whipple, the doctors say they are thinking of putting in a stent to enable the food in her stomach to pass through to her intestines, or if that isn’t an option, then doing a bypass around the blockage. They are hesitating right now because it is apparent that some food is getting through, but my mom (and I) would feel better about doing it now, when she has some strength, as opposed to waiting until she is in crisis, and likely very weak. My mom is so brave and a more gracious woman I have never met. She is my best friend and I am terrified of losing her. I wish you courage on your road ahead, you are very young to have this terrible disease. All I can say is that my mom’s positive attitude has helped her, and me, to get us through the tougher times. We even had her Celebration of Life early, so that she could be there to enjoy it with all her friends and family! It was a wonderful evening, with lots of incredible memories shared.

[toodotty]

Hi JMorphy,

Has your mum been prescribed Creon? Also get Ensure drinks this will at least give her some essential vitamins and give her a bit of a pick up. It is available on prescription. What chemo are they offering?

toodotty

[JMorphy]

She hasn’t been prescribed Creon. Her stomach is very full and distended because of the blockage so she does not want to eat more and make it worse. They offered a chemo, gem... something but mom declined. She has had severe chronic back pain for 10 years, major spinal surgery, fusion, laminectomy, severe scoliosis. She walks bent over at right angles. Vomiting is excruciating for her and she is having a fairly good quality of life right now and does not want to degrade what good time she has left.

[Michaela1]

Hi again,

Toodotty is definitely right in getting the creon, it helps with the digestion of food, you can't reallynoverdose on it either. Say if I eat two weetabix I would take 3000 creon. Then I do not gate any pain or sickness after. I personally do not get on with any of the nutrition foods, bu I find petit filous type yogurts are little and give you a small boost of energy. The more fat in the food the more creon she would need to take.

As for the operation, I would take anything that would make my pain or any other symptoms easier, but like I say I am younger and my body maybe able Take the hit better.....but if you choose to, then like you say better earlier.

I wish you luck in your decisions.

Michaela x

[PCUK Nurse Jeni]

Hi there Jmorphy,

Apologies for the delay in replying to your post due to staff shortages. Has there been any decision made concerning your mum and inserting a duodenal stent or having bypass surgery?

How is your mum doing now? Is she still vomiting?

You can read some more about bypass surgery here:

http://bit.ly/2Sxb87X

And a duodenal stent here:

http://bit.ly/2lWRAhf

Alleviating gastric outlet obstruction will certainly help with the vomiting and also, eating. When the outlet of the stomach becomes blocked, it will decrease the appetite as the person feels full up all the time.

As others have mentioned, your mum may benefit from pancreatic enzymes, such as creon, especially as she has a head of pancreas tumour.

Please do not hesitate to contact us for more information - we would be happy to speak to you on the phone or you can also email - the contact details are in the signature below.

Kind regards,

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[Hii]

Hi my mums 87 she has had a metal stent put in and was fine we were worried about her going under General and she was very weak for about 5 days but felt better after it was put in she was very jaundice at the time and it helped with that and her food intake although its been in a month and shes gone off food and drink again.