tiah

It appears we are reaching the end. After one round of FOLFOX mum was doing well. She had an ascites drain about a week later and we went camping away for Easter. While there mum was very nauseous and was vomiting. She started getting confused and became delirious. We left and rushed her to hospital. She had hepatic encephalopathy, she was hyponatraemic and had elevated bilirubin (80). They suspected all was triggered by spontaneous bacterial peritonitis (SBP). Unfortunately they’ve treated the infection and although her confusion and delirium disappeared with lactulose, she has entered into liver failure and they are suspecting hepatorenal syndrome. It’s all happened so quickly. We had the Caris testing ready to go but it’s too late. Although we are seeing a gastroenterologist tomorrow at the hospital (she’s still admitted) we just want to get her home. Palliative care are involved however she is quite comfortable and has little pain or nausea and she is still eating, but she is sleeping more each day.

Thank you so much for your well wishes and support through our journey. We never thought mum would decline this quickly – 2 weeks ago she was fine. It’s heartbreaking. And I’m angered because I feel more could have been done earlier for her, but a gutless surgeon decided not to operate.

Thanks Lainy. It’s beyond frustrating because side from the ascites mum is very well. Her chemo nurses even said today she looks well and she says she feels well other than the ascites discomfort. Still no mets. She’s eating/drinking fine and very little pain apart from the occasional localized pain at tumor site. It’s hard to accept we’re running out of options.
Her CA19-9 is still low as always has been, her bilirubin is only slightly elevated (16), so minimal it’s clinically irrelevant. Her GGT is sitting around 800 and her ALP sitting at 400 AST and ALT normal. Kidneys function is excellent despite cisplatin.

Hi everybody, thought I would just let you know that we are having some positive response to the gemcitabine/cisplatin, with the first scan showing shrinkage and no spreading! We were quite happy to hear. We are still yet to get an opinion from the other surgeon, we will likely see him once mum has ridden out the rest of the gem/cis. So we are not sure where to go next after this chemo.

She seems to be tolerating it okay, main issues are neutropenia and low platelet counts which have caused chemo to be delayed a couple of times. One time I pushed the oncologist for a few days of filgrastim, which was times well as she managed to catch a cold that thankfully didn’t progress into anything worse. She’s also had some mild cellulitis on her face which I caught on early to and ensured it was treated with antibiotics.

Besides that, she’s having some problems with pain in the bowels, which gets worse after chemo. Likely due to mucositis.

Mum started her Gemcitabine/Cisplatin chemotherapy last week. First week was tolerated well. Some mild nausea, but beside that her energy levels have been okay and no other symptoms so far. She went today to have her second dose as part of cycle 1, however her platelets came back at 50 x 10^9/L (it was at 90 before her first dose of chemo) and they said they had to delay. They will try and do the chemo in a weeks time if her platelets are okay. Her localised liver pain has eased since chemo and her shoulder nerve pain has been near non existent which the oncologist saw as a positive sign.

We finally got all the referrals sorted to see the surgeon in Sydney so hopefully we can go see him soon also.

Hi everyone,

Mum had a follow up CT scan on Monday. Since last checking in Mum has not had any further treatment.

Today she saw her Oncologist, who said that there are no new mets (yay!), however the primary tumour has grown a few mm in size, which wasn’t the best news we wanted to hear given she had SIRT 5 months ago.

Unfortunately I was unable to attend the appointment, but mum asked about if she could have repeated SIRT treatment however her oncologist said she “already had a lifetime of radiation” and it wasn’t appropriate. I found this information conflicting given that there has been studies showing the safety profile of repeated SIRT treatments and there’s even people on these boards who have had repeated treatments also. So I have told mum to ask her oncologist (who will be calling her in the next few days) for a review by the doctor who performed the SIRT.

So the next step, as per the oncologist, is to discuss with the surgeon the possibility of microwave ablation on the primary tumour. I understand the tumour is very large so this will be difficult. The oncologist said if this isn’t possible she will be starting gemcitabine/cisplatin very shortly. I’m upset she has to return to chemo, but the side effect profile will be much better than the FOLFIRNOX she had last year. The irinotecan really took its toll on her.

As for immunotherapy, the trials available to her are apparently not showing any positive results vs chemo alone. Keytruda (Pembrolizumab) is still $$$ expensive and we cannot afford it.