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

7

(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

Hi Mandy,

Sounds like your husband is in good hands. I hope the radiation hasn't been too difficult to take and works really well for him.

Here are the contact details for Caris in Australia:
Email: cariscare@carisaustralia.com.au
Phone: 1300 308 213 or 02 8014 6637
Web: www.cancerprofiling.com.au

I'd also sent an email enquiry to Foundation One and they sent a lengthy reply, but  the nurse from Caris phoned me directly, had a long conversation, and it seemed much easier to have the local office to help plus the testing panel seemed extensive.

All the best,

Genevieve

Hello Mandy,

I've just seen your post and am sorry to hear about your husband, it sounds like you have been through a lot. Mine is the same age as yours and has also had CC. He has been fortunate though to have had three liver resections, most recently in July this year. I'm sure you have good cancer care in Melbourne but if you are after a second opinion, we saw a medical oncologist, Dr Peter Grimison, in Sydney, after the second surgery (done in Sydney because his local surgeon was away). Dr Grimison is at RPA or has private rooms. At the time he mentioned that they had a CC trial going. One of the doctors in Sydney also said that there are very good radiation people associated with RPA.

The other thing we did after the recent surgery was had molecular testing done through Caris Life Sciences. They have an office in Sydney and a very helpful oncology nurse who phoned us and organised everything, followed up, answered questions, very good service in my opinion. The report comes with a clinical trials connector so you can see online what trials in Oz or elsewhere might suit. I can give you contact details if you want them.

I hadn't heard of the GI Cancer institute (so thanks for that) but saw that they are in Camperdown so presumably associated with USyd and/or RPA.

Best wishes,

Genevieve

10

(21 replies, posted in Chemotherapy)

Hi Serena,

My husband was offered gem alone after his second resection for ICC a couple of years ago. He'd recovered uneventfully from surgery, and from his first surgery 8 months prior, and is otherwise fit. Chemo side effects were really not bad - some hair thinning, tiredness in the last couple of cycles and low platelets once. He found it more psychologically difficult. Gem alone was offered on the basis that there was no clear evidence, but  it might help and wouldn't be too toxic.  He had a recurrence and a third resection a couple of months ago and is now on adjuvant Xeloda. We had molecular testing done after this latest resection. It showed that Xeloda should be effective and I think it was worth the money just for that - makes it easier to tolerate side effects if you know it is likely to be helping.

Best wishes to you and your mother in making the decision.

Genevieve

Andrea,

Is your dad being seen at a large hospital? If he is interested in another opinion, Sydney seems to see quite a bit of CC and RPA would I believe be the biggest. Some of the doctors there have private practices as well if he prefers that.

Best wishes,

Genevieve

12

(22 replies, posted in Introductions!)

Hi Judith,

I'm an ex-Queenslander and read this forum because my husband has had intrahepatic CC. He is currently clear after 2 resections, 2.5 years after it was first found.

I understand your husband's decision, but just wondered if you or your husband's doctors have spoken to the liver unit at PA in Brisbane? They would be the biggest in the state.

Best wishes,

Genevieve

13

(8 replies, posted in General Discussion)

Thanks Percy,

God bless you too.

Genevieve

14

(8 replies, posted in General Discussion)

Hi January,

Do you happen to have a title for the article or link to the abstract please?

I'm also interested in a possible connection.

Thank you,

Genevieve

15

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

Hi Marion,

Just posted it there now.

Genevieve

For any Aussies -

With an assessment and referral from a GP, Medicare's Better Access program provides a rebate for up to 10 individual sessions in a year with a psychologist or clinical psychologist. I believe that's correct at present - it changed this year (fewer sessions now covered) so could do again.

17

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

Hello Rain,

I can't help with the chemo break, although it sounds like a holiday to visit family would be lovely for your Dad, if he decides he wants to do it and you get the oncologist's okay. Re his mood though, the recurrence and ongoing chemo must be so hard for him. Did you know that Medicare Better Access here covers up to 10 sessions with a psychologist/clinical psychologist, with a GP referral? The right person might be some help.

Best wishes,

Genevieve

18

(12 replies, posted in Introductions!)

Hi Rain,

We saw Dr Charbel Sandroussi - surgeon, and Dr Peter Grimison - oncologist (for opinion on adjuvant therapy after the surgery).

RPA has the national transplant unit and the doctors there also operate privately at the Mater.

Best wishes,

Genevieve

19

(12 replies, posted in Introductions!)

Hello Rain,

This may not help since treatment is planned for your father, but have you tried people at RPA/Mater in Sydney for another opinion? My husband was seen there last year for 2nd resection for ICC (local surgeon was away), and oncology second opinion. They see quite a few CC patients.

Regards,

Genevieve

Sorry Marion, I've just posted it now.

Best wishes,

Genevieve

21

(187 replies, posted in Hospitals)

In Australia, my husband has been operated on by two excellent surgeons.

Canberra:

Dr Charles Mosse
Hepatopancreatobiliary, Upper GI and Advanced Laparoscopic Surgeon
Calvary Clinic Specialist Medical Centre / Suite 20
40 Mary Potter Circuit
Bruce ACT 2617
Tel: (02) 6253 4122


Sydney:

Dr Charbel Sandroussi
Upper Gastrointestinal, Hepatobiliary and Transplant Surgeon
100 Carillon Ave, Suite 306 RPAH Medical Centre
Newtown NSW 2042
Tel:  (02) 9565 1375
Operates at RPA and the Mater Hospitals.

Genevieve

Hi Kylie,

Contact details are:

Dr Charbel Sandroussi
Upper GI, Hepatobiliary and Transplant Surgeon
100 Carillon Ave, Suite 306 RPAH Medical Centre
Newtown NSW 2042

Phone: (02) 95651375

His secretary's name is May.

Good luck!

Genevieve

Hello Kylie, that's great to hear that your mother has done well with chemo so far.

Just thought I'd say that if you are interested, I can give you the name of the surgeon in Sydney who operated on my husband earlier this year for recurrent intrahepatic CC. This surgeon sees quite a number of CC patients each year, sees lots of people from out of Sydney and is also very approachable. He works at RPA, which has a big liver unit (including the national liver transplant centre) as well as privately at the Mater, which is where we went. Your mother may not want to travel but just thought I'd mention it.

Best wishes,

Genevieve

Hi Eli,

Thank you so much for all the information. It's been put to us as a trade off between possible benefit and toxicity, because of the lack of evidence regarding effectiveness, particularly for intrahepatic CC (and my husband's appears to be a less common type). We've spoken to two oncologists and that's why they are not suggesting gem/cis or any other combination.

Marion, thank you very much for finding out.

Thanks again to you both,

Gen

Thank you Marion, for asking about BILCAP. And thank you also for the links re adjuvant therapy; that was interesting reading.

Best wishes,
Genevieve