Newly diagnosed pancreatic cancer in HK

[Mercy110]

Hello all. It is lucky for me to find the supportive forum in such a difficult time. We are a family from Hong Kong.

My dad, aged 63, is newly diagnosed CA pancreas yesterday. He has been feeling unwell for some time (stomachache). We guess he had tolerated the pain for a while as we used to take care of my mum, who was a stage 4 CA rectum patient and passed away on 14/4/2021. Before my mum’s death, he had complaint about the stomachache and we scheduled colonoscopy for him. The checking occurred after mum’s death. Nothing’s special in his colon and stomach but the ultrasound found shadows in his liver. Pet scan showed mets in his liver, lungs, lymph nodes and bone. Result of blood work further confirmed that he was suffering from pancreatic cancer.

My dad showed no emotion upon knowing the diagnosis as he seems so calm. He seems to lose all his interest and life target after my mum’s death. My sister and I found it difficult to accept as we just lost our mum to CA rectum. However we managed to fight again. Our oncologist planned to let my dad admit to hospital for the fluid inside his tummy and livery biopsy. He is losing weight and appetite. We are worried if he could manage chemotherapy as I know those drugs are quite strong combination.

Thank you for any advice and comment in advance.

[PCUK Nurse Dianne]

Dear Mercy110,

Welcome to this forum, I am sorry to hear of your cause and finding us, however I am pleased you were able to find this wonderful forum too.

Mercy110, I am so sorry to read your story of Dad's so recent diagnosis, and of course your very sad news of Mum's recent passing. I cannot begin to imagine how you must all be feeling at present, some very emotional and overwhelming days.

Mercy110 I am sure you will receive some wonderful support and input from this very special forum family, however I hope that you might also feel able to reach out to our support service if you wish.

Our details are below, please do feel free to touch base via email (nurse@pancreaticcancer.org.uk) if this would be helpful for you. Our service is closed over the weekend, however if you do wish to email we would reply on Monday.

Thinking of you and your family this sad time Mercy110 and sending your our most heartfelt thoughts to you all.

Dianne

Pancreatic Cancer Specialist Nurse

Pancreatic Cancer UK

Support Line - Freecall 0808 801 0707

Open Monday,Tuesday, Thursday & Friday 9amam -4pm

Wednesday 10am - 6pm.

email: nurse@pancreaticcancer.org.uk

[Skippy]

Mercy10 it's good your Dad will go into hospital and be cared for with all those specialists. He must be so worn down on the loss of your mother. He's in the right hands.

My bro 74yrs diagnosed with PC had an op and he was so well cared for. On building up his strength in hosp and released. They gave him (as per his age/blood tests and condition) the approp chemo. He had 3 sessions Dec Jan and Feb 2020 chemo with symptoms of just exhaustion for 3 days then he was back to a good normal day of activity. We all thought chemo was v scarey, but today its so well delivered to a patient with amazing drug extras to help with the symptoms. They do monitor it carefully.

[Mercy110]

Thank you so much for both of your reply. I will reach out to the team when we know what’s next for my dad’s treatment. His appetite is so poor these days and always vomit after meal. He can’t lay down comfortably because of the pain. He’s always in low-mood though he explains it is because of his tiredness. We wonder how long he could stay with us as he is weakening while no carer was available to take care of him since my mum’s death. Both my sister and I are working full-time, from 8:00a.m. to 5:00p.m. Except for cooking soft diet for him during weekend, not sure what else I could do...

[Mercy110]

We were told that my dad is suffering from jaundice (index about 160) that he could not use GemCap as the first line chemo. Instead the doc recommended oxaliplatin with xeloda. We were wondering if jaundice is reversible or anything we, as my dad’s carer, could do to reduce the level of jaundice.

His appetite is poor but his ADLs are independent so far. The disease is progressive but he is not having any chemo till Wednesday next week. The doc also suspected my dad started to develop syndrome of Bile duct occlusion due to his increasing level of jaundice. Should we start the chemo ASAP? Or should we wait but we are worried no chemo is available for him and he needs to go hospice otherwise. 

[PCUK Nurse Nicola]

Hello Mercy 110,

 My name is Nicci and I am one of the specialist nurses working on this support service. I see that my colleague Dianne has responded to an earlier post.

 I noted on your most recent post that you mentioned your father has developed jaundice. Jaundice can occur if your liver isn't working properly, or if your bile duct becomes blocked. The bile duct carries a fluid called bile (which helps with digestion) from the liver to the duodenum. You mentioned that your father’s doctor suspected a bile duct occlusion.

 Mercy 110, there isn’t anything you can do as his carer to help relieve this jaundice. In the UK, if the bile duct is blocked, and the patient is well enough, a specialist doctor would consider putting in a stent to relieve the obstruction.  This is a thin tube to open up the bile duct and allow the bile to follow from the liver to the bowel – has this been discussed at all?  The stent would normally be placed during an endoscopic procedure called an ERCP.

This would normally be done before having chemotherapy. Chemotherapy is cleared through the liver and kidneys. In the UK we have parameters to ensure these are working as well as possible prior to starting chemotherapy. I would suggest discussing with the team your Father’s individual circumstances and the best way forward for him.

I hope this helps? As Dianne said, please feel free to contact us directly on our support line, contact details below.

Kindest regards

 Nicola Murphy 

Pancreatic Cancer Specialist Nurse, Pancreatic Cancer UK

Support Line – Free call 0808 801 0707

Open Monday, Tuesday, Thursday & Friday 9am - 4pm

Wednesday 10am - 6pm.

email: nurse@pancreaticcancer.org.uk

[Mercy110]

Thank you al for the reply. My dad passed away on 12.5.2021. Due to the no visiting policy under COVID-19 in HK, we lost him while we were on our way to the hospital. Losing both my parents within one month made me speechless, but he left comfortably in his dream. Thank you again for the support here in the forum.

[PCUK Nurse Rachel R]

Hi Mercy110,

It's Rachel here, one of the PCUK nurses.  I'm so very sorry to hear of the loss of your Dad and that you were not with him when he passed, this must be very hard to come to terms with.  I'm sure it's such a comfort that Dad slipped away in his sleep.  

Life can feel very cruel at times and losing both of your Parents in such a short time of one another is so very sad and must be incredibly difficult to accept. Please accept my heartfelt condolences for your loss.

Kindest wishes, Rachel 

Pancreatic Cancer Specialist Nurse

Pancreatic Cancer UK Support Line: Freephone 0808 801 0707 (Mon, Tues, Thur, Fri from 09:00 - 16:00hrs and Wed from 10:00 - 18:00hrs)
or email: nurse@pancreaticcancer.org.uk

[miraten]

This is scientifically proven that when one partner dies, the other completely lose interest in living. Like half of him died. I understand your pain, and I am full of compassion for your feelings because my mother also suffered when she lost my father, who died of lung cancer. Unfortunately, this month, it turned out that my mom is in the early stages of breast cancer. The doctor said we could save her, but I don't know if she wants to. After losing her husband, she has no desire for life. On the doctor's recommendation, I bought her some pills, but she refused to take them. I don't know how to convince her.

[Borobi]

Hi Miraten. Grief affects everyone differently and the loss of a life partner can be devastating. But I think it’s a bit misleading to say that everyone loses interest in living when they lose their partner. You keep going, keep putting one foot in front of the other and life goes on - and does improve. The grief does become manageable and life can be good again. I’d hate anyone who may have a terminally ill partner to read your post and think that their life will be over as well. Support your mum and encourage her to have interest in things. Bereavement counselling may help or at least talking to others who have gone through similar experiences. Two bereaved friends of mine were the most amazing support to me.