Stage 4 pancreatic cancer with metastatic multiple other organ involved

[GothamGirl1970]

My mum’s best friend aged 78 in the last 3 weeks has been diagnosed with primary stage 4 pancreatic cancer that has metastasised to her liver, kidney (1) and most of the lymph nodes in her body(they are calling it lymphoma) and her colon.

It was discovered accidentally during a hernia surgery last month. Mum’s BF let’s call her Jane hates hospitals, doctors and is not health aware but is extremely private and has only told my mum and her husband. Over the last 2 weeks she has had many tests which she insists on going to alone, and isn’t sharing information partly because I think she doesn’t understand what she is being told. It seems like they may have told her something along the lines of life expectancy of 6 months because she made a comment about missing her birthday which is in August.
However today she had a port put in to start a course of “high dose” chemo. The schedule is 27 treatments every other Tuesday which would be a year.
From what I know about chemo it’s very debilitating, a treatment every other week sounds like a hell of a lot, and if they have in fact given her some idea of expectancy, why would they schedule a year?

Does anyone know anything about pancreatic cancer?

I’m afraid my experience with pancreatic cancer isn’t great.

My aunt was diagnosed with stage 4 that had metastasised and given 6ish months. Like your mums friend she was scheduled for chemotherapy but unfortunately wasn’t able to tolerate the drugs at all.

My lovely aunt died 9 weeks after her diagnosis :(

I’m sorry this isn’t more positive but pancreatic cancer is a bitch of disease and rarely has a long life expectancy.

hugs

I've known two people with it, and the deterioration was very quick.
One was around 6 months, the other 6 weeks until the end.

Just wanted to add, if she is receptive to the idea of chemo, then they'll go along with it.
Chemo is only done on the day if all else is well, and cancelled or delayed if not.

DP was initially diagnosed with pancreatic cancer in Sept 2020 but his is bile duct cancer with a liver met and 13/19 lymph nodes involved. He was initially told 6-12 months with chemo and 6 months with no treatment, pancreatic cancer is often diagnosed late and 3/4 people die within one year of diagnosis. DP is on Gem/Cis chemo which seems to be kinder than the chemo for pancreatic cancer, he has a two week cycle of chemo then a week off before another two week cycle with blood tests on the weeks he has chemo.

Thanks everyone.I had a feeling it was very bad

I think chemo is often given as a palliative treatment with pancreatic cancer. From what you've described of how the cancer has spread I would say your assumption about 6 month life expectancy is fair. This website is very helpful.

www.pancreaticcancer.org.uk/information/treatments-for-pancreatic-cancer/chemotherapy/chemotherapy-for-inoperable-cancer/

For such widespread and severe cancer in someone of that age I'm amazed they've suggested chemo. It's all about quality of life for the next few months.

That was my thought too. If she can’t be cured why do chemo

Because chemo can help with symptom control?

@bloodywhitecat that’s just it she has no symptoms they found it by accident

But she will get symptoms and they are awful, especially the jaundice. Maybe by managing the tumour growth they can prevent the onset of jaundice.

Are you sure it's a primary pancreatic cancer and not a lymphoma with pancreatic involvement?

Treatment and prognosis of both is very different. Pancreatic cancer can be treated on a weekly schedule - but wouldn't describe as high dose. In this situation treatment would be to prolong life and improve symptoms. Treatment for lymphoma is more intensive, but outlook is much better

@Annietheacrobat I’m only hearing what Jane is letting slip out. What she said is stage 4 malignant pancreatic cancer which affected the other organs I listed above. They said it metastasised from the pancreas and the lymph system is at a lower stage. However I’m not a doctor and you seem to have knowledge in this area but unfortunately I don’t have a definite answer for you on that.
What I can tell you is that usually even to get Jane to take a paracetamol we have to put her in a straight jacket so for her to allow a port is a big deal.
Some other things I didn’t mention in my opening post because I didn’t think they were relevant but might be:

The consultants said that the chemo medicine is a combination of medicines just for her but this combination is usually not tolerated well but not to worry there are other medicines. The first 2 treatments will last 6 hours and thereafter 4 hours a treatment session
Apparently she asked about her hair and was told she would likely lose it all, lose weight but her face would swell up?

I only mentioned it because you used the word lymphoma in your OP. May have been a typo. Didn't mean to confuse the situation (but yes lymphoma can spread to the Pancreas). There are a few possible combinations of drugs she may be having. I won't try to guess as would most likely get it wrong. She must be pretty fit if they are offering her treatment though

Hope it goes as well as possible for her.

I know two people with stage 4 Pancreatic Cancer. One survived 18 months, the other 5 months. Once chemo stopped they had between 6-9 weeks. I send your friend all the love.

@Annietheacrobat that’s just it. She is ok fit but not super fit. From what I have learned here and read elsewhere and the snippets Jane tells mum, this is terminal. There is no “cure”. Jane kind of mentioned 3-6 months in an obtuse way, and someone above provided a great link to the nhs cancer website. From there and on that forum, mostly it was relatives posting because their loved one had already passed away. The 2 big take aways I got from reading all the forum was living any longer than a few months at this stage 4 plus all the other cancers is almost a miracle and that the chemo basically is so tough on the body you need care all the time and are close to being an invalid. It’s very unpleasant to say the least.
If in fact Jane has 3-6 months or less, I don’t want her to be in that state. She is a simple woman, handmade lace for a living so left school at around 15. I think she would not know what debilitating means. She is stubborn as an ox, proud and private. It’s likely that they gave her a lot of consultation time but she is a woman who wouldn’t ask what something she never heard meant or ask questions of a “fancy Mister” so I have doubts that she is fully aware of what’s in the future.
I just want her to enjoy whatever is left

A big thing is weight loss so anything you can do to help with cooking would be helpful. If anyone can go to appointments and help advocate this will help?