1

(17 replies, posted in General Discussion)

Hi Julie,

So sorry to hear about your recurrence. Good to hear that it is small and operable.

Regarding the scans, just thought I'd say that for my husband, MRI has shown a tumour (and other spots) as small as 3mm. His recent 5mm tumour which showed on MRI was not visible on PET/CT or ultrasound a few weeks later.  We have also been told that MRI is more sensitive than CT for seeing liver tumours.

Wishing you all the best,

Genevieve

2

(38 replies, posted in General Discussion)

Hi Tony,

Not sure if this is any help, but just wanted to say that I hope you are also getting some assistance from the hospital with the emotional side of things. There should be an oncology psychologist or counsellor I would think, and if that person doesn't seem right for you, your GP should be able to send you to someone.

If you feel you'd like a second opinion, RPA is I believe the biggest liver unit in Sydney. Some of the surgeons there are involved in research collaborations with people from the US and Europe. When we were in Sydney 3 years ago the oncologists also had clinical trials going.

Regarding genetic testing, we had it done last year, had to pay the full amount though as it is not covered by Medicare or private insurance. There is an office for one company in Sydney and they send the samples to the US (results were back in less than 2 weeks). I believe the Garvin institute will be sequencing patients samples at some time, but they were not ready last year.

Good luck with the testing results.

Regards,
Genevieve

Just posting that it is now 4 years since my husband's first resection for multifocal intrahepatic cc.

He appears very well, although we found out in August that the thing is back, though small, and he will have RFA to get rid of it soon. It has only showed on MRI, not on PET/CT or ultrasound, and it has taken some time for the doctors to work out whether he should have another resection, or whether RFA would be better this time to avoid another major surgery.

But, he has survived 4 years, and in spite of 3 resections and 2 lots of adjuvant chemo, has been well for most of that time and physically fit, We think that the exercise (he cycles a lot) probably helps. 

Regards,
Genevieve

4

(38 replies, posted in General Discussion)

Hi Tony,

I'm also from Australia and my husband had one of his resections in Sydney; we saw an oncologist there as well three years ago. Are you at a big hospital and do you have a multidisciplinary team reviewing your case? 

Good luck tomorrow with the oncologist.

Best wishes,
Geneveive

5

(69 replies, posted in Introductions!)

Thank you Marion :-)

Hi Tiah,

I'm not sure about timing...my lay person's understanding is that a person needs to be off chemo for a few weeks prior to surgery. But it would take a few weeks to get an appointment anyway so might be worth investigating if your Mum  was to consider it.
We are in Canberra and have been happy with the surgeon my husband sees here. Sydney is obviously a lot bigger though and from interstate I would think that Sydney or Melbourne would be the places to go. There have been people from Melbourne on this site but I don't know who they have seen.
One of my husband's resections was done in Sydney (because the surgeon here was away for several weeks) and the surgeon there was Dr Charbel Sandroussi. He's at RPA or has private rooms at RPA medical centre.
Genevieve

6

(69 replies, posted in Introductions!)

Hello Tiah,

I'm in Australia so thought I'd say hello, though I can't help regarding folfirinox as my husband hasn't had it. He has had 3 resections for ICC and has had gemcitabine once and xeloda once, both times as adjuvant therapy.  I presume your mother is being seen at a major centre in Adelaide. Has she considered getting a second surgical opinion, either locally or interstate?

Best wishes,
Genevieve

Hello Kim,

Sorry to hear about your sister. I'm from Australia and my husband has ICC. He's had surgery twice and chemo in our city, and surgery through RPA/Mater in Sydney. If you are looking within Australia, our experience has been good and we think he has been well treated.  Can't speak for the other capitals but others have mentioned hospitals in Melbourne as well.

Best wishes,

Genevieve

8

(13 replies, posted in Introductions!)

Hi Karen,

I've sent you a forum email again, hope you get it.

Otherwise you can click on my name and send me an email.

Hope to chat soon,

Genevieve

9

(6 replies, posted in Good News / What's Working)

Thank you all :-)

Genevieve

10

(6 replies, posted in Good News / What's Working)

Hello,

Just thought I'd write that it is now over 3.5 years since my husband's first resection for intrahepatic cc. His CT scan a couple of months ago was clear, 10 months after his third resection and 3 months after finishing adjuvant Xeloda. Next scan is an MRI in a couple of weeks.

Apart from a surgical hernia and some tiredness he is very well, cycling lots and going to the gym regularly, which I think has helped with recovery from the operations and chemo.

Best wishes to all,

Genevieve

11

(13 replies, posted in Introductions!)

Moose, I hope the chemo has been going okay for you.

Karen, if you don't get my forum email and would like to chat, please feel free to send one to me.

Regards,

Genevieve

12

(13 replies, posted in Introductions!)

Hi Karen,

We are also in Canberra...my husband has had intrahepatic cc, three resections and two lots of chemo. We also had molecular profiling done by Caris after the last resection.

I'd be happy to chat and will send you an email. I'm quite uncomfortable online so rarely post here.

Best wishes,
Genevieve

13

(43 replies, posted in Introductions!)

Hi David,

Sorry to hear about your diagnosis and that it took so long. Have you thought of going to one of the big hospitals in Sydney for another opinion? My husband had one of his three resections for intrahepatic cc at the Mater in North Sydney, with a surgeon who also works at RPA. RPA would I presume see more and be more familiar with cc treatment than where you live.

Regards,
Genevieve

14

(31 replies, posted in Introductions!)

Hi Mary,

My husband has had pain after a resection, around the scar, and the surgeon and GP also said it was nerve pain and could take months to completely go away. It did go away after a while, and he was reassured when the next scan showed nothing. He has also had pain at times from incisional hernias. I would talk to the doctors again if you are worried.

Best wishes,
Genevieve

Hi Daisy,

My husband has had two recurrences after resection, and had surgery and then adjuvant chemo both times. His was a single lesion each time in the liver only, so that is different to your Mom.

I think Percy had ablation (microwave?) after recurrence with a lymph node involved, but you have probably found that post if you have been searching.

Best of luck with the treatment for your Mom,

Genevieve

16

(3 replies, posted in Websites)

Hi Duke,

You may have seen this already but this is a free PubMed article - if you click at the top right corner of the abstract where it says PMC free full text, you can get the full article.

regards,
Genevieve

17

(10 replies, posted in Introductions!)

Hi Alison,

Sorry to hear about your relative. I am from Oz and thought I'd say hello. I saw your post earlier but didn't reply because I can't really answer your questions. My husband had his second  resection in Sydney (he's had three, currently clear) and we had molecular testing done after the third resection. We've had good experience with surgeons and oncologists .

Best wishes,

Genevieve

18

(8 replies, posted in General Discussion)

Dear Mandy,

I'm so very sorry to hear of your husband's passing.

Sincere sympathy to you and your children.

Genevieve

Thank you Kris! Hope you stay very well too.

Hi Marco, it was major surgery each time - big incision, at least overnight in ICU and 6 days in hospital for each of the recurrences, weeks to recover.  He has been fortunate that the recurrences have been in places that allowed resection - far enough from major blood vessels and enough remaining liver.

Best wishes,

Genevieve

Hi Teresa,

I read your other post and am sorry to hear the chemo is not working for your Dad.

There was another lady from Melbourne who recently joined - Mandy, user name blodynbach, and she was looking into clinical trials for her husband.

We live in Canberra and my husband's surgeon here is Dr Charles Mosse 02 6253 4122;  oncologist is Dr Yu Jo Chua.

We've also been to Sydney (Dr Mosse was away at the time of husband's first recurrence) and the surgeon was Dr Charbel Sandroussi 02 9565 1375. We also saw medical oncologist Dr Peter Grimison. They work at RPA and also privately at RPA medical centre and the Mater Hospital.

Best wishes,

Genevieve

Thanks again Lainy and Marion.

Julie, I agree it takes a different perspective to see three surgeries as a positive, but we do too!

I hope you never have a recurrence, but just some more information - my husband's first recurrence was back in 7 months,  not far from the surgical margin, but fortunately there was no suggestion he couldn't have surgery again so soon. The doctors said that it probably there, but microscopic, at the time of the first surgery, just invisible on intra-operative ultrasound or any pre-op or post-op scans. It had grown quickly - not seen on CT 6 months earlier, over 4cm when resected.  The second recurrence didn't grow nearly as fast.

Prayers and good wishes to you too,

Genevieve

Thank you Lainy and Marion.

Genevieve

Hello,

I think this is uncommon so thought I'd write that my husband has been able to have three liver resections for intrahepatic cc over the past three years - Oct 2011,  July 2012 and July 2014.  This last time he was very fortunate as the 1.5cm tumour was close to the hepatic vein, but the surgeon managed to get clear margins again. He had no adjuvant chemo after the first resection (right lobe, 5.5cm tumour with satellites up to 0.5cm), 6 cycles of gemcitabine after the second surgery (4.2cm tumour) , and now  is on 8 cycles of adjuvant Xeloda.  Apart from the post-op recovery time, the surgeries have given him "well" time, for which we are grateful.  He has an incisional hernia (again) but nothing will be done until next year after chemo is finished, assuming all is still okay.

Regards,

Genevieve

Hello,

Just thought I'd write that it is now three years since my husband's first resection for intrahepatic CC.. The tumour had satellites when first seen on a CT scan for something unrelated. He has had three resections, most recently in July this year. Margins were clear each time. He's currently on adjuvant Xeloda.

Regards,

Genevieve

25

(21 replies, posted in Chemotherapy)

Hi Serena,

He's recovered from surgery really well, thanks, cycled 60km the other day so feeling quite fit, just a bit more tired than usual from the chemo. He's finding the Xeloda okay. It's in tablet form so is easier to take than the gem infusions - no needles. It's the drug  chosen for use in a large adjuvant therapy trial in the UK which is going at present.

Best wishes,

Genevieve