Dad has Stage IV

[fizzylemon88]

Hey everyone,

My Dad (57) was diagnosed with Pancreatic Cancer in May 2020. He had the Whipple's, followed by Folfirinox ending treatment in January 2021. His CT after that was clear despite pathology from surgery suggesting 4/16 lymph node involvement, we were starting to feel positive that treatment had worked. But in April he started to experience abdominal pains. It wasn’t until recently he was referred to another CT followed by a PET. This confirmed our worst fears, it had spread and further anomalies were detected. One growing localised though around a vein so inoperable, however a second more concerning legion was found in the abdominal wall. He’s still not started treatment yet due to awaiting biopsy results for the second anomaly. Obviously this will only be to prolong as opposed to cure.
 

I’m not sure how long he has left, and unsure if I’m being naive thinking he looks healthy at the minute and so I shouldn’t be worried for the immediate future? I’m looking for advice on how quickly someone can deteriorate.

 

Additionally, as I am only 27, I’m finding having a terminally ill parent quite a lonely journey. I wondered if anyone else was in a similar position to me, who was willing to share their experiences?

 

thank you.

[Sandyvon]

I’m sorry to hear your news. I had a Whipple in June, 2020, when my daughter was 28 years old. It was harder on her than it was on me. My daughter accessed counselling and she was given support from her work so she could take time to focus on supporting me. 

 

I had accepted that I had a chronic disease that needs to be managed. Fortunately, I had an excellent manager in my Medical Oncologist. 
 

I would highly recommend Next Generation Sequencing (NGS) of your Dad’s tumour. I was fortunate that after Folfirinox which was only temporarily successful, my Medical Oncologist sent a sample of my tumour for NGS and a genetic mutation was discovered. I’m on a targeted drug which appears to have stopped the progression of cancer. 
 

It’s good that you’re reaching out for support. My very best wishes. 
 

 

 

[PCUK Ellie]

Hi @fizzylemon88 - I'm glad you've found your way here, though of course I appreciate it's not a community anybody wants to have need of. As @Sandyvon's said, it's good you're reaching out for support. 

 

Have you had a chat with a Pancreatic Cancer UK specialist nurse? They're there for you if you'd like to talk - of course, everybody is different so giving timeframes is hard, but they'll be able to give you some guidance on what to expect, help you plan for the future, and answer any questions you might have. You can call 0808 801 0707 or send them an email. 

 

Caring for a loved one with pancreatic cancer can feel lonely, and I'm sorry to hear that's been your experience. It can be so difficult for people who aren't in your position to 'get it', and that can definitely feel isolating at a time when you need support. We run an online support session called the Family, Friends and Carers' Cuppa every month, to bring together people whose loved ones have pancreatic cancer to talk and share experiences. The next one's on Tuesday 30th - if you'd like to join, you can book here. 

[Rachel161080]

Hi, I’m so sorry to hear about your dad. I’m a little older than you (40) but I understand the feeling of being alone. My mom (65) also has pancreatic cancer and is no longer being given treatment due to her poor health. My Dad has passed away and my sister lives in Australia so I really do feel for you as I know what you are going through. I would of been absolutely lost if it hadn’t been for Diane one of the PCUK specialist nurses. Please reach out to them as they really are amazing and extremely knowledgable. Equally if you want to reply and ask me any questions regarding mine and my moms journey then please do feel free. Make sure to look after yourself also, It’s very important so you are fit and healthy for your dad. Take care

 

Rachel 

[Mumshelper]

Hello,

 

Reaching out to you as I am a similar situation/age. My mum is 61, I'm 28. She started 6 months of Folfirinox with the view to get the Whipple, but the chemo didn't shrink her tumour enough. She started another chemo in July and again there has been no change to the tumour. She is due to start radiotherapy in 2 weeks. With an operation not possible I know any treatment is only prolonging rather than curing. Like your dad she looks so fit and well so it's sometimes hard to believe we're even in this situation (which has been going on a year now). 

 

All I can really say is make the most of each day, the tiniest moments. Take loads of pictures and videos that you can always look back on. Sometimes I get so anxious and stressed thinking about the future instead of just focusing on the here and now, while life is good. I guess it's normal and we are lucky to have lovely parents that we care so much about.

[Vasil]

Hello. I am 44 and coming from Bulgaria. My father died from pancreatic cancer a month ago after having fought for a year and a half during which time he was more or less OK although on chemo. But it was unbearable to watch him in his final weeks as he rapidly deteriorated and was no longer able to rise up from bed and suffered from delirium. We could not have a proper goodbye and I miss him incredibly. Sorry for sharing this just needed to reach out

[Vasil]

But I would like to add that for one year and a half my father had an acceptable quality of life and that is what truly matters. We need to be thankful that there are new treatments able to prolong a terminal patient's life. Best regards.

[Nicky03]

On 11/21/2021 at 10:59 PM, Mumshelper said:

Hello,

 

Reaching out to you as I am a similar situation/age. My mum is 61, I'm 28. She started 6 months of Folfirinox with the view to get the Whipple, but the chemo didn't shrink her tumour enough. She started another chemo in July and again there has been no change to the tumour. She is due to start radiotherapy in 2 weeks. With an operation not possible I know any treatment is only prolonging rather than curing. Like your dad she looks so fit and well so it's sometimes hard to believe we're even in this situation (which has been going on a year now). 

 

All I can really say is make the most of each day, the tiniest moments. Take loads of pictures and videos that you can always look back on. Sometimes I get so anxious and stressed thinking about the future instead of just focusing on the here and now, while life is good. I guess it's normal and we are lucky to have lovely parents that we care so much about.

 

[Nicky03]

Hi there, just catching up on threads and wondered how things are now? X