Topic: Recently diagnosed, our journey so far.

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

Re: Recently diagnosed, our journey so far.

Hello, Curlywurly and welcome to our remarkable family but sorry to read about your Mom. I am not a Doctor but a scratching feeling sounds like it could be the stent. Or the stent may be pulling/pinching. My husband had stents but always took it a little easy when lifting things. The shivers and temperature are infections that just seem to come along with CC. And yes, they can really wipe you out. When Mom went to the Hospital for the infection, did they check her stent as they can get blocked and perhaps the ONC can move the exchange of stent date up. I would let him know about the exhaustion and pain she is having now. Don't be worried about the stent exchange it is a piece of cake as they take one out, put in the new one in the same place. All is much easier than the first time. Teddy used to get his exchanged every 2 -3 months and come home an hour later. Sending you best wishes for Mom and keep talking about the wedding with her! Please also keep us posted and by the way with the CC being stable that is good and we love the word stable!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Recently diagnosed, our journey so far.

Hi Curlywurly,

Welcome to the site. Sorry that you had to find us all and I am sorry to hear about your mum, but I am glad that you have joined us all here as you have come to the best place for support and help, and you will get a ton of both from everyone here. By the way, I too am in the UK, in Dundee and my dad was diagnosed and treated here as well.

My dads CC was also deemed as inoperable from diagnosis for the same reason that your mums was, the portal vein. My dads tumour was too close to it and they felt that surgery would be far too much of a risk for him. My dad had PDT as his treatment alongside having a metal stent inserted to clear up the jaundice. He used to get the odd pain in his right side, sort of like a jag he used to describe it as and he believed it was the stent causing that so it could well be your mums stent causing a bit of pain there. I assume that it is a plastic stent that your mum has?

The tiredness you mention is quite common for this cancer and my dad had a lot of issues with fatigue. He never had chemo at all so his fatigue was down to the CC and not chemo. The shivers and a temperature are a sign of infection and also could be down to the stent getting clogged up. Again, these 2 issues are very common here and hopefully the anti biotics will clear up any infection. Perhaps some pain meds are required just now to deal with the pain in your mums side? My dad used to take paracetamol at first then later on codeine based meds and your mums gp will be best placed to advise on that.

Here is a link to AMMF who are based in the UK and hopefully you will find some of the UK links there of use to you. I know that both you and your mum will be very worried about everything but you are not alone now, we are here with you. Please keep coming back here and feel free to ask any questions that you have, we will do our best to help answer them for you. And please keep us updated on how things go for your mum, we know what you are going through right now and we care.

My best wishes to you and your mum,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Recently diagnosed, our journey so far.

Hi CurlyWurly,

I live a few miles away in Upper Gornal.  I found this site when my Dad was diagnosed in 2010.  I've made some great friends on this site and it was a godsend when my Dad was fighting CC.  Gavin facebooked me tonight to tell me a new member had posted who lived nearby! So first of all "hi" x

My Dad was diagnosed after 5 weeks in Russells Hall Hospital, he was then sent to the QE under Mr Bramhall.  It was there he had his first metal stent fitted.  Dads CC was inoperable due to the position of the tumour.  He was offered chemo but his bilirubin level never came down to a safe level to start it, despite having 3 stents.  Each time chemo was scheduled his blood test would show high bilirubin levels again. In the end he had an external drain fitted too to help drain the bile.  The fact that your Mom has been able to have chemo is very promising.

Does your Mom have a metal or plastic stent?  Perhaps it needs cleaning out, which is very common.  My Dad was given permanent antibiotics whilst he had his stent to help prevent infections, which seemed to work for him. Perhaps you could ask about this for your Mom. He was also told to drink, drink and drink, to help flush the bile through.  He had warm water with lemon morning and night and lots of water/squash throughout the day.

Have you had a second opinion? We asked for Dads CT scans to be sent to Professor Lodge at Leeds, as he is prepared to operate of cases that the QE won't.  Unfortunately by the time we took Dad it was too late to operate (he would have operated from the scan he was sent)  Mr Bramhall wasn't too happy we wanted a second opinion, and whilst I do think the QE are a good team, it was more for our piece of mind that we had ticked every box, as you can understand we didn't have the hope of chemo.

Good luck with the scan, from experience the run up to it can be more daunting than the day itself.

Please keep in touch, if just to vent your anger, thoughts or worries, we have all been through/are going through this journey, and we are all here to help.

Take care

Andie

Devoted Daughter to the most wonderful Dad a girl could ask for.  Sadly lost his battle on 19.02.11, peacefully in the arms of Mom and I.  As requested by Dad "we will keep on smiling".

Re: Recently diagnosed, our journey so far.

OMG! It's my Andie!!! Hello, sweet Andie! If you all will forgive me, this is one of my Babes! Andie, Jenn and I took our Journey together. Andie thank you so much for stopping by and offering your great advice to Curlywurly! You are so missed and I hope you are doing well and that MuM is locking the front door. Jenn stops by now and then. I  just told her not long ago, I miss Andie. Your advice is superb and I am thinking if possible you and Curlywurly could maybe meet in person?  My best wishes to you and your family!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Recently diagnosed, our journey so far.

Thanks for that Andie!! smile

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Recently diagnosed, our journey so far.

Thanks Gavin for reaching out to Andie and thanks to you, dear Andie for following up on Gavin's request.  This is what it is all about - kindness and caring.  I am in awe of you both.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Recently diagnosed, our journey so far.

Hello my dearest Lainy & Marion!!

Even though I don't post as often you and the rest of my cc family are always in my thoughts.  The bond we have is way too strong to break.

I keep in touch with a few of my cc family on facebook, hence Gavin getting in touch with me about CurlyWurlys post.  If you have FB please add me (Andrea Fear was Clark).

I won't take up the post here so will post in the members section smile

Love and (((hugs))) xx

Devoted Daughter to the most wonderful Dad a girl could ask for.  Sadly lost his battle on 19.02.11, peacefully in the arms of Mom and I.  As requested by Dad "we will keep on smiling".

Re: Recently diagnosed, our journey so far.

Hi curlywurly35,

I just want to say hello and welcome to the site.  There is great advice and support here and someone always comes along to help.

I am also in the UK, north of the border like Gavin.  My sisters CC was inoperable and from the outset she suffered from fatigue. She never had chemo either  and I understood that for her the fatigue was mainly due to her poorly finctioning liver.   Infection was also a recurring problem as she had a stent and a drain but antibiotics usually did the trick. 

For the pain, things can change and I would suggest if its a new pain then get it checked. 

Here and the AAMF website Gavin mentioned are both worth there weight in gold.

Clare

In the stars now . . . .

Re: Recently diagnosed, our journey so far.

A few links on fatigue for you Curlywurly -

http://www.macmillan.org.uk/Cancerinfor … tigue.aspx

http://www.cancer.org/treatment/treatme … igue/index

Hope some of that is of help to you.

Best wishes,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Recently diagnosed, our journey so far.

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

Re: Recently diagnosed, our journey so far.

Kate....does your Mom have a metal or plastic stent?  If I recall correctly, the stent was inserted in October hence, it could occlude with debris and sludge and cause infections. 
Pain due to the tumor invasion has been reported frequently hence, I would adhere to the physicians recommendation re: medication.  The oral chemo pill, is it Xeloda?
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Recently diagnosed, our journey so far.

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

Re: Recently diagnosed, our journey so far.

Hi Kate,

Sorry to hear that your mum is still experiencing this pain. Is she taking anything for the pain? My dad had a metal stent and the only pain he really got from it was a sort of jagging pain every now and again in his side, but he did feel more pain when he slept on his side where the stent was.

Here is a link about Sorafenib that has a lot of info on it, hope it is of some use to you -

http://www.macmillan.org.uk/Cancerinfor … fenib.aspx

And I think that contacting Prof Lodge is a great idea. Please let us know how that goes and I so hope that your mum gets this pain under control asap.

Best wishes to you and your mum,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Recently diagnosed, our journey so far.

Kate,

A search on the site for Sorafenib threw up these discussion here -

http://www.cholangiocarcinoma.org/punbb … 1358125423

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Recently diagnosed, our journey so far.

Kate....Sorafenib is mainly used for Hepatocellular Cancer however; it also has shown to be quite tolerable for CC patients.
I would push hard for a consultation with Professor Lodge.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Recently diagnosed, our journey so far.

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

Re: Recently diagnosed, our journey so far.

Kate...great job.
We have some previous postings on Prof. Lodge
http://www.cholangiocarcinoma.org/punbb … c.php?id=9
http://www.cholangiocarcinoma.org/punbb … hp?id=5250
http://www.cholangiocarcinoma.org/punbb … php?id=477

Good luck,
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Recently diagnosed, our journey so far.

Hi,
Sorafenib is a multi-kinase inhibitor(TKA) ( in short, it works through multiple pathways to slow or stop the  growing of the cancer cells in the liver); it works for cholangiocarcinoma too.
It was recommemded to me by a well known liver specialist at Mayo Clinics when I went for my 2nd opinion in case my current chemotherapy agent Xeloda stop working. However the shortcoming of most of these oral TKA is drug resistance will develop relatively quick and you may need to switch to another kind of TKA to continue the treatment.

God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Recently diagnosed, our journey so far.

Hi Curlywurly,

I hope they manage to get your Moms pain under control asap.

Whilst my Dad wasn't able to be treated by Professor Lodge, the treatment we received on the day of our consultation was outstanding.  Dad and I met with Professor Lodge at 9.30am, after a chat and an examination he arranged for a CT scan and blood test to be carried out.  He even came out of his meeting at 3.30pm to give us the results face to face.  We stayed in the hospitals hotel, which is free for the patient and partner, and I  think i paid £25 for my room.  We travelled up the night before because our appointment was early in the day. 

I emailed Professor Lodge directly then he put me in touch with his secretary, who once had recieved my Dads original CT scan and Professor Lodge had looked at it, phoned me and booked an appointment for the following week.  She then gave me the telephone number for the hospital accomodation.  If you search Professor Lodge on here there should be some posts regrading him.

Good Luck

Andie x

Devoted Daughter to the most wonderful Dad a girl could ask for.  Sadly lost his battle on 19.02.11, peacefully in the arms of Mom and I.  As requested by Dad "we will keep on smiling".

Re: Recently diagnosed, our journey so far.

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.

:'(

Re: Recently diagnosed, our journey so far.

Dear Kate, where to begin. I am so very sorry to read of your Mom's journey. To keep asking and wondering about what might have or could have been will do no one any good. Take some deep breaths and FORGE ahead. I am not familiar with your System there BUT is there a possibility to get Mom transferred immediately to Prof. Lodge? If not that, what about a phone call to Prof. Lodge asking him what he would do if this was his Mother. While you are deciding what to do please make sure they are keeping Mom as comfortable as they can. None of us ever know exactly what to do as this CC is like a strange monster who has invaded our lives. You do the best you can. A septic infection takes time to leave, but maybe once the infection is cleared up your Mom will begin to feel better. I am not a medical person, I tend to listen to my gut feelings and about all I can really come up with here is to see if Prof. Lodge would talk with you. Wishing you the best results and please keep us posted. Be strong!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Recently diagnosed, our journey so far.

Hi curlywurly35,

I am so sorry to read about your mums deterioration.  I understand how hard it is to comprehend after watching my sisters rapid decline with this disease. 

I would focus on what needs to be done now to ensure the best care for your mum making the time she has as comfortable, pain free and full of her wishes as possible.  The palliative team should be able to address all of this with you. 

In relation to questioning what has or has not been done, as a relative you did what the medical profession recommended. Whilst being a great advocate for your mum you cannot expect to be an expert on such a complex disease so please do not doubt your own actions.  Everything you have done has been out of love and with the best of intentions for your mum.  That being said, there may well be questions and issues that you need to put to the professionals to answer the doubts that you have. 

Time is precious.  Take care of yourself too and please let us know how your mum and you are.

Clare

In the stars now . . . .

Re: Recently diagnosed, our journey so far.

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.

Re: Recently diagnosed, our journey so far.

I'm so sorry for you and your Mom. It is difficult to cope when your Mom doesn't want to discuss her feelings or her condition. Please don't second guess your decisions. We did that for a while and its a waste of energy and time. Most cases are inoperable by the time of diagnosis and even when scan shows its "borderline", the surgeons often find its not during surgery. My sisters tumor also had invaded the portal vein and they code to do chemo first , but all doors to surgery were shut quickly due to growth there. Anyhow, we have adjusted our minds to try to take one day at a time and find joy in every day we can. Take care, Willow

Willow