Hello everyone,

Thank you all for your support and encouragement. Unfortunately Mom passed away last week due to her CC.

She was taken back in to hospital 6 days before she passed, Dad had a phone call in the morning to say Mom was agitated and distressed and that we should all go to the hospital to see her.

Mom passed away shortly after we all arrived, we were all with her and told her we loved her.

Even though it was expected it doesnt prepare you for when it does.

There will always be a big void in out lives as Mom was such a bright and bubbly character.

We have lost a diamiond but the skies have gained a star.

Kate.xxx

Hello everyone

A further upday on how Mom is.

She is now home from hospital after spending nearly 2 weeks there being treated for her infection. She has been given a prescription for a 6 week course of antibiotics along with a concoction of other tablets to help control symptoms.

All in all we're at a loss as to what to do now. Mom from the beginning has not wanted to know any details of her condition/progress. From the beginning she has not wanted to know her prognosis, this was made clear to all Drs and medical staff. This is why they told us and not Mom that there was nothing else they could do for her.

I dont know if Mom thinks she's going to get better now and that her being so poorly is still her infection. It's so difficult because I just don't think I have it in me to tell her that the end may be near. I worry that her symptons over the last couple of days are signs that the endi is getting closer as last night she had diarreah and this morning she was vomitting a black looking substance.

At no point have we been able to discuss this disease with her, to know how she is feeling and what she understands etc. I feel like I have limited time left with her and there are things I want to talk to her about, learn the things she's never told me etc but she doesnt want to talk about things at all. I feel like we should know her wishes for things afterwards but I can't approach the subject. She does not want to see any of her friends or speak to anyone either. It's a shame to me that this may be her last chance to see her friends but she is blocking people out.

She is so angry with everyone and everything, which is understandable. But I hate to think she may be spending her last time with such anger.

I honestly do not know what to do for the best.

Also, I received Proffessor Lodge's medical report from Mom's initial and second CT. He stated that Mom presented with a borderline operable/inoperable condition. I am devastated to think that had we known to contact him sooner then we may have been able to operate. The consultants at the QE told us at the beginning that if her cancer does not seem to respond after the second scan they would try a different chemotherapy regime. We were told from the QE that the results of this scan were promising and they were pleased it had been stable yet Proffessor Lodge's report said he'd seen a growth of 1cm so I am now questioning the QE and why they didnt change the chemo regime. He also said that if the results of the scan at early June show a stable condition then he would consider seeing mom with a view to discuss possible surgery. However, the results showed that mom's tumour had grown to 14cm, a further 5cm since February.

I too feel so angry.

Hi All

Thought i'd give you an update on what's been happening.

Mom has been really poorly these past two weeks with a septic infection now thought to originate from her liver. She has been having IV antibiotics, blood transfusions, insulin, fluids and painkillers so far. She'd been taking steroids, sorafenib and painkillers and they think they'd worn her stomach lining away to cause bleeding as well to add to complications.

When she was admitted they were really worried about her, the Drs asking us if she had any ressusitation requests!! you can imagine our shock!

We have since been told results from her latest CT scan which shows unfortunate progression in her disease. Since February her tumour has progressed to 14cm and they have now said that further chemotherapy is not an option and there's not much else they can do! :'(

They are hoping mom to return home this week and involve the palliative care team to help control the symptoms and become more comfortable.

The Drs at our local hospital where mom is now have told us she my only have a few weeks left while another has said months. :'( we are all devastated.

Today I have received Professor Lodge's initial medical report based on her scans from February. He said that mom's case originally was borderline operable/inoperable so now I am questioning everything we have done to date with regards to mom's treatment. I am also kicking myself as to why I didnt know to contact Professor Lodge sooner.

We were told at Christmas that if following the first scan following chemo treatment Mom's condition was not improving they would change the chemo type. We were told in february following this CT scan that her condition was stable and they were pleased with her yet Professor Lodge's report notes a slight progression to 10cm. I am now wondering why the QE didnt change her chemo treatment at this point like they initially said they would if the treatment was appearing none responsive. Now mom has had to undergo months of further chemotherapy which hasnt helped to leave us in a position that no further treatment is possible.

It was also said in his report that should we have been sent to Leeds Mom would have had an MRI and PET scan to stage the disease more accurately, and if things appeared stable following the more recent CT scan then it would be worth a visit to see him to discuss things.

I am now questioning the treatment we have received to date at the QE and wondering if more could have been done to treat my Mom. She is so incredibly poorly still and to think she is not going to improve is heartbreaking for everyone involved. Maybe we have been naive these last few months hoping for a stable condition but to think that in such a short space of time Mom's condition has deteriorated so dramatically is unbelievable. We are all still in complete shock that this whole thing is happening, everything to date just seems so surreal.

:'(

Thanks for then info.

I have sent what info I have (original referral letter with written CT scan results and blood results) to his secretary so I hope to hear back soon.

Has anyone been treated by him before on here?

Thanks again
Kate

Marion,
Mom has a metal stent. Today they said they don't think the pain is from the stent.
I've just looked at the tablets are sorafenib I think. Do you know what they are? Do they have many side affects?

As per Andie's post above I am going to contact Professor Lodge from Leeds.
Thanks
Kate

Hi Guys

Thanks for your responses.

Just an update for you, Mom went back to the hospital last week to talk to the doctor about the pain she was experiencing. He suggested it was still from the infection so presribed her another course of antibiotics.

After another week on the antibiotics and no subsidence of pain Mom has gone back today. We managed to get an appointment with the registrar today and said the pain shouldn't be coming from the stent. I think they are now thinking the pain is due to the tumour itself. My Dad was with her today and he has told me that the Dr said the liver could be stretching do to the tumour? Has anyone heard of this? Does this mean that the tumour is becoming aggressive and growing? Mom has been off chemo now for around a month and has a scan 12th June.

They have today presribed her with some steroids to perk her back up so she begins to eat/drink/function more normally and they have also given her chemo tablets. Unfortunately I do not yet know their name.

Safe to say I am now worried that her conditon is not as stable as we first thought.

Any thoughts/experiences are greatly welcomed.

Thanks in advance

Kate

Hello,

I'm new to this site, I'd thought I'd submit a post of our recent dealings with CC.

My mom has recently been diagnosed with CC. It started in August 2012 with an ultrasound scan for a completely different reason. Whilst she was having the ultrasound they spotted a mark on her liver. She was then sent for a CT scan and blood tests.

In September my mom had an appointment with the doctor at our local hospital who confirmed that they believed my mom to have liver cancer, due to the mass on her liver and the elevated blood levels. However to be sure they wanted to carry out a biopsy.

This was carried out that week with the test results confirming their thoughts that mom had CC. This obviously came as such a huge blow to the family as Mom was not symptomatic at all, which I have since learned is quite common with CC.

The next day that we found out coincidentally Mom was showing signs of Jaundice, I arranged for her to have another Ultrasound to see if she had a blocked bile duct, which she did.

Since then Mom has been treated at the QE hospital in Birmingham, UK. She was admitted at the end of October to have a stent to open the bile duct. She recovered really well from that and was discharged relatively quickly.

After another appointment at the QE we were told that Mom's mass is circa 9cm and invading her portal vein. Because of this they have said that her CC is in-operable and her treatment route would be chemo. At this point mom was completely un-aware that she was in-curable. I'm sure you can imagine how this was, the Dr though broke the news so blase, and just said 'sorry about that'!! Mom has asked not to know about prognosis. I dont think knowing any statistics would do her any good. She barely asks questions of the dr because I think she is too scared to know the answers.

They decided that mom's treatment plan would be 8 rounds of Gemcitabine and Cisplatine, once a week for 2 weeks then a week off. Her chemo treatment didnt begin until early November, by which point I think my mom had thought they'd given up on her, seeing as it was nearly two months since it all began and she hadnt been given anything by means of treatment.

Mom has now finished this regime and has coped amazingly, she has not had any nausea, sickness or any major side affects. The only complaints she has had have been ringing in her ears so the Dr reduced her Cisplatin and a bad taste in her mouth. She has not been in any pain or even been taking painkillers, still symptomless. She had another CT scan half way through her regime and the results were fairly promising, the Drs were pleased, and said that overall the mass had stayed the same and they confirmed it had not spread anywhere else.

However, ever since Mom has finished her chemo (which was probably about 3 weeks ago now) she hasnt been very well. She developed the shivers and a high tempertaure so we took her to hospital where she was given antibiotics. Around this time she was so fatigiued that she didnt have the energy to do very much at all. I have been wondering if this is normal once treatment stops? She has been so tired these last couple of weeks, is that finishing treatment along with contracting an infection that has wiped her out?

When recovering she also tried picking up her small (but heavy) dog to put her on the bed and she's not sure if she's pulled her side as since then she's had a pain in the location where she had her stent. Is it possible to dislodge a stent from something like that? She has been back to our local GP who said her vitals are ok. She's worrying herself sick though, she's a natural worrier anyway but seeing her like this worries me. She has decribed the pain as a kind of scratching. I'm unsure if it's the stent or the cancer.

Has anyone else had anything like this?

Mom's due another CT scan in a few weeks. To be honest I think we're all dreading it. I'm getting married in a few months time and all I want is for Mom to there and well and to enjoy the day with us all.

Thanks guys