Recently diagnosed, our journey so far.
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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
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
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!
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
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