tiah

Hello everyone, time to update you all again.

Since my last update mum has had the first procedure for the SIRT (the mapping/angiogram part) and also a PET scan. The PET scan showed positive results, no new spreading anywhere in the body – still the one localised tumor. It also showed there is still some active disease, and that SIRT will help to kill the active disease and shrink the tumour, which hopefully enough will ultimately lead to surgery to get the damn thing out!

Mums Doctor for the SIRT treatment is positive for good results and seems to think it should all go smoothly. She will have the procedure on the 17th of May, 9 days before her 50th birthday. Today is mothers day, and because she is working today we celebrated it yesterday. I took her for a pampering session at a wonderful day spa which was just what she needed to get her to relax and chill out. She had a wonderful day and as always seeing her smile makes me so happy. It really is the small things in life. She’s been feeling pretty well, and her and Dad have been going out camping and enjoying nature when they can as well, so hopefully when she has the SIRT she can continue living how she is and doesn’t experience too many side effects.

I will keep you all posted once she has the SIRT spheres procedure!

Hey everyone.. Feeling at a bit of a standstill at the moment.

Mum saw the Doctor who is planned to perform the SIRT therapy. Unfortunately, when she saw him, her surgeon had not passed on any scans or results and so the appointment wasn’t helpful. There was a big lack of communication between them. The doctor said he was unsure if SIRT would be useful considering the tumor is ‘dead’ as this would mean it is not vascularised enough for SIRT. A senior doctor and lead in SIRT therapy from the US is visiting Australia next week to provide education on SIRT therapy to doctors, and he plans to discuss mums case with him about whether SIRT will be beneficial.

Mum saw her oncologist yesterday for a check up and port flush, and he said he was disappointed in the lack of communication between her other doctors. He rang the SIRT doctor and spoke to him while mum was there to organise a PET scan, which she will have in the coming weeks. Mum will also have an angiogram to get a greater picture on the mapping out of vessels in the liver and the tumor. The oncologist said there would be other chemotherapy options (he didn’t mention which ones), if SIRT is not appropriate.

We feel a bit drained at this point, as we have been feeling like there is no direction, and each time we are in a position where we feel there is direction then there is a road block. Obviously we are battling with time, as we don’t want the tumour to become active and spread, which the oncologist said is a possibility, as it only takes one live cell to start it off.

I’ll keep you guys posted, I just feel very drained and worried, and my poor mum feels even worse. I was so very grateful as she got to attend my graduation ceremony for university this week, something I thought may never happen when she was first diagnosed. It’s times like these that I treasure family and of course the amazing health care workers that have gotten her to where she is now, even if we are at a bit of a standstill.

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.

Thanks guys! We are very satisfied with how well FOLFIRINOX has worked. Definitely a chemotherapy regime for those who are young or fit/healthy to consider, as while it has been successful in this case, it is a very nasty chemo and by 8 rounds it can really wreak some havoc with your body.