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Our story so far.


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It's almost 12 months to the day since we had the devastating news that my Dad had pancreatic cancer.  Not knowing who to turn to, I found this forum and quickly realised how beneficial it was to read people's experiences, questions and advice.

(Quick recap since I've not posted in months - Cancer is in the tail of the pancreas. Biopsies confirmed it spread to liver and stomach lining. Folfirinox started February 2021, oncologist hoped for 8 cycles and up to 12 months survival.)

It wasn't easy, the Folfirinox. My dad had neuropathy in his hands and face from the first cycle, which at times was unbearable. Even cutlery from the drawer affected him and being winter/spring time the temperature outside wasn't on his side either. Tiredness and appetite were affected too but he continued on the chemo and other than a blip in his platelets after cycle 7, he actually finished 12 cycles. Amazing man he is.

In October his CA19.9 levels had gone back up to pre chemo (20k+) and at the end of November a CT revealed growth and further mets to peritoneum, lung and liver (in addition to previous liver mets) and his CA19.9 rose to 53k.

At the beginning of December he started GemCap. He's had experience of capecitabine before as he had bowel cancer about 4 years ago. It wasn't great then and he thought he would end up in a wheelchair because his feet felt like he was 'walking on bone'.
The gemcitabine infusion he says makes him feel worse than the Folfirinox infusions.
This Friday coming he should have completed 2 cycles (6 infusions plus the daily tablets), but low platelets have meant he will have completed 4 infusions.

He's started taking CBD. His oncologist is ok with it. I'm on the fence about its benefits but at this stage what harm can it do. I've heard the tales of miracles.

His appetite seems up and down. He never did get creon during his massive weight loss in the first half of last year, but his weight seems to have stabilised.  The dietician prescribed shakes which he likes.

So thats where we are. I worried that we would not have Christmas with him, but not only did we have that but also his 72nd birthday and 50th wedding anniversary. Amazing man he is. 
In himself, he still feels fine with the odd pains and twinges in his stomach.Next oncologist appt is end of the month.

I find it difficult to make plans knowing that the gemcap chemo is the last option and it's not going smoothly. Also knowing that this horrid disease can make things go downhill quick.
It feels like I've spent the last 12 months in some kind of permanent, high alert-tearful state, not wanting to talk to anyone, or go anywhere. Covid has been an obvious hurdle to everything and I'm scared witless that I'll pass it on unknowingly.

If you've read this far, thank you.
Does anyone have any advise re getting/keeping platelet levels up?
Has anyone had experience of CBD?


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  • 2 months later...

I feel your pain and understand not knowing what the future holds ; I am waiting for results of CT scan to see what oncologist will recommend has he has been neutropenic twice has Pallitive chemo has Cause bowel problems and she doesn’t want that to happen again the CT scan showed his Mets had grown in the liver and lungs that was in February, he hasn’t had chemo since then he is on iv antibiotics to clear bowel up ; I don’t go anywhere only hospital or shopping and I am to tired to to talk to friends; But how can you really explain this awful nightmare; 

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