My Mum, 49yo in Australia

Hi everyone. I hope you all had a great easter. It’s time for yet another update, as mum saw her HPB surgeon again today.

The news is mixed. Firstly, they are very glad they decided not to operate as the risk was overwhelmingly high, and there’s a good chance she would have experienced liver failure. Secondly, she is experiencing portal hypertension as the tumor is now pushing on the vena cava. As a result, the surgeon knows he needs to treat the portal hypertension and shrink the tumor, as he cannot remove it now.

With this, the surgeon has decided mum will have SIRT therapy. Which, I have read a little bit about on these boards and know there’s been plenty of success. Once again I was unable to attend the appointment so there are many questions I will want to ask. The surgeon is still persistent that the tumour is ‘dead’ and they will be monitoring her regularly after the SIRT therapy. Not sure about plans for how often/how much etc at this stage. I’m not sure what the ideal dosing/schedule would be? If he’s confident the tumor is dead then the aim is to shrink it with hopes that one day it can be removed (at least not for a year he said). He also said she likely fits the criteria for SIRT (accessible through the public health system), however if she doesn’t he will ‘make sure she does’. Which is good to know.

Any information about SIRT from reliable sources you could provide would be fantastic, as I haven’t read a great deal into it. Thanks so much everyone!

Hi everyone! Time for another update. I can’t believe it’s now 6 months since my mothers diagnosis. Time really does fly by.

My mum had a portal vein embolisation 5 and a half weeks ago, she was very fatigued to start with and experienced some pain. Since then, she’s been doing well although she does get lethargic so she manages this by napping during the day. She is also finding it very hard to eat much, I think because the liver is pressing on her stomach. She says she is never hungry anymore. She’s lost 9.5kg since the procedure, however she is still at a very healthy weight thankfully.

We also got her a fantastic wig because she was feeling very self conscious about her hair, having lost nearly all of it, and her wig looks amazing! However, her hair has already been growing back since finishing the Chemo at Christmas time. She’s been using Nioxin to wash her hair which we feel is helping.

As for moving forward, she has been scheduled to have surgery on 11th of March! We saw her surgeon today who said she has 30% healthy liver which means he should be able to resect and have her survive off this much liver.

He is not 100% confident that he will be able to remove the entire tumor, but he has said that he will not know until he attempts to operate. If he cannot remove the tumor with a clear margin he will not proceed with the surgery. He has already registered her for a new clinical trial at the Royal Adelaide Hospital for a new radiation procedure, which kills only tumor cells and not healthy liver cells. I wasn’t able to get any extra information as I could not attend the appointment today, but I’m hoping to find out some more soon.

Hey everyone, a further update after seeing the HPB surgeon.

Mum will be having a portal vein embolization within the next 2 weeks to kill off the half of the liver with the tumor in it, and also to enlarge the healthy part of the liver. After 4 weeks she will have another scan to see if the liver is large enough to progress with resection.

After resection, there is a possibility that not all the tumor can be removed still due to the closeness to the vena cava. If there is any remaining they will look into radiation.

Has anyone else had a portal vein embolization before? If so, did the liver regenerate enough?

Thanks
Tiah