Hello,
my (31F) mum (60) was diagnosed with pancreatic cancer with liver mets end of Jan and we are about to start FOLFIRINOX Chemo treatment roughly 6 weeks later… far too much waiting around for pancreatic cancer. We’ve been told it’s incurable but I think this is a chemo which MIGHT shrink the tumour? Feel like I’m clinging on to any hope I can because the thought of loosing my mum is absolutely crushing.
can anyone shed any light on their experience with this chemo? What happened after the 12 rounds and how bad were the side effects? Is there anything we can do to mitigate these side effects
Hi Hulahoops123
Welcome to the Online community.
I am sorry to hear of your mum's diagnosis of pancreatic cancer and I can understand that it is really hard when there is an incurable diagnosis. I hope that the treatment helps to shrink the cancer and give your mum some more time.
Although I had a different cancer to your mum, I have been through chemotherapy and remember my worries at the time, particularly around side effects.
There are different types of chemotherapy, different regimes and people can respond in different ways.
This link is some info on the chemo that mum is due to have. However please remember that although all the potential side effects are listed- it does not mean that mum will have all or indeed any of them. I found that during my chemo my main side effects were fatigue, tummy effects and some tingling sensations in my hands and feet. I did find though that these could all be helped with medication.
FOLFIRINOX (or FOLFOXIRI) | Macmillan Cancer Support
My own experience of chemo was that I would feel worst for the first few days after the chemo and then would pick up after that. Mum should be given a 24 hour cancer helpline number for the hospital and it is there to offer support. I would call mine to ask about things and to talk about any side effects. They could also often make suggestions that would help.
I think that with chemo one of the best things is to go with the flow and see how it affects mum. She will need lots of rest. I found eating small amounts regularly better than bigger meals. Drinking plenty of fluids. Really eating and drinking what she fancies. I found sharper tasting drinks- eg lemonade more palatable. Sometimes chemo can affect how things taste. I found also it helped to listen to my body and to rest when I needed to. I found it helpful to get up and get dressed, even if I did end up on the sofa for the day. Sitting outside in the fresh air helped too.
One thing to be aware of is that chemo can mean that mum could pick up infections more easily. So it was suggested to me to buy an accurate thermometer and to take my temperature once a day. Any changes in temperature would mean calling the hospital.
Mum would be given a medical review with each cycle of chemo and blood tests. In between these times she can contact her CNS/hospital. Her consultant or CNS would be able to tell you specifically the plan but I would expect her to be offered a scan at the end of the chemo and possibly one half way through.
It is hard supporting someone with cancer and to hear that the treatment is palliative. We do have a forum on here that you may want to have a look at when you feel ready.
Supporting someone with incurable cancer forum | Macmillan Online Community
We do also have the Support Line that is available between 8am-8pm daily if you feel like talking things through would help.
I wish your Mum well with her treatment and hope that any side effects she has are manageable.
In the meantime, we are here when you need us.
Jane
