My Mum, 49yo in Australia

Thanks Lainy. It seems she’s starting to worry herself sick, she says she has an absolutely horrible feeling that she is going to get bad news, she has been having some light back pain and she says she just doesn’t feel “right”. Not sure if this is a psychological thing or if there really is something wrong, but I’m trying to reassure her not to worry and that there could be some good news on Monday.

Yesterday mum had her first scan (8 weeks) since starting chemo. We are awaiting the results on Monday when we see her ONC before having her next round of chemo.

I must say I am incredibly nervous about it. I’m glad he has decided to do a scan earlier than we initially thought, as we aren’t wasting anymore time on a treatment that may not be working. As for her current state of disease, to this date she still has not had any symptoms related to the disease (other than some skin itching, which was present early in her diagnosis, but the last few weeks there has been none). Considering how large her tumor is, I’m very shocked we haven’t seen any issues with the bile duct and still no jaundice, however we are very very grateful. She has maintained her weight also (up/down 1-2kg – nothing drastic).

As for her chemo, the day she receives it is the worst. The Irinotecan drug she receives causes painful leg cramping, which even occurred after her ONC gave her a 1 hour magnesium infusion prior to receiving the chemo. The leg cramping disappears after 24 hours. The lethargy its the worst she is experiencing, and she also has thinning out of her hair, which is all to be expected.

It’s still very hard to think she even has cancer, because she still lives life as per normal, except for the chemo. I’m absolutely dreading walking in on Monday to be told that the chemo has not done anything and the disease has progressed. We will not give up but I am petrified of seeing her go down this route.

Hi ladies, yes they did a blood culture although no results yet. Her oncologist just came to see her and luckily I was here at the time. He said the bloods are looking good and he wants to keep her in hospital for about 2 more days (she’s been in hospital for 48 hours now). Happy to know she’s on the mend, she’s looking a lot brighter today.

As for FOLFIRINOX treatment, I asked why he selected this and he said gem/via just isn’t effective enough to shrink a tumor for intention of surgery, and is often used as more of a palliative measure or to extend life, whereas FOLFIRINOX has a better response rate and because mum is young, fit and healthy he wanted to hit her hard.

Round 2 of chemo has proven to be very tough. Mum had to go to the ED yesterday as oral antibiotics weren’t cutting it for a respiratory infection and she had 2 days of a mild fever but then had a high grade fever yesterday. IV antibiotics were started immediately, then once stable was transferred to a private hospital under her oncologists care. She’s still receiving antibiotics every 6 hours via her port. Fingers crossed she recovers and she’ll be okay for her next round of chemo in 6 days. I just feel so sad for her at the moment, she had concert tickets and missed the concert tonight because she’s in hospital, but she knows her health is her number one priority.