July 2, 2010 at 3:35 pm #39522jennifersMember
JDH – my Dad was diagnosed in January and it was also deemed inoperable. He’s been doing chemo since, and has his first scan on July 14th. It will be a scary day for us all. Like others have said, it is a crazy rollercoaster ride, with more lows then any of us would like. I also have a baby of my own, but am not ready to say goodbye to him. The thought of it breaks my heart. However, after enough time, you will get stronger and realize that all you can do is enjoy every single second that you have with him, and be thankful for those precious minutes since many people never get them. I still have my days where I just want to curl up in a corner and cry (and sometimes do), or where a song on the radio will set off emotions in me that I thought I had under control, but for the most part, I just spend as much time with him as I can, and be thankful for the days he wakes up feeling “okay”.
I am thinking of you and your family — I really hope they get the stent in, as others have said, since I’m sure it will make her feel better, and I hope the chemo helps to slow the monster down and give you all more time.
JenJuly 2, 2010 at 10:14 am #39521katieloumattMember
Welcome to the best support forum in the world, or in all our opinions!! You have done the right thing by coming here and seeking advice and support and you will get lots of that.
As Kris said cc is often not diagnosed until qutie advanced, my Dad was diagnosed beginning of May last year. Initially he was thought to be inoperable, then a cavalier surgeon felt he could offer a liver resection….
Sadly this failed and he died 9 days later havng never regained consciousness.
However, there are plenty of people on this board that haven’t gone down the surgery route and have had chemo, radiotherapy, cyberknife etc.
May I ask how old your Mum is and what her general health is? Also whereabouts is your Mum being treated?
Please come back here often, this is truly a goldmine of information and support.
Thinking of you and your Mum,
KatieJuly 2, 2010 at 3:12 am #39520linda-zSpectator
Welcome to our “family”. I mean that. You will find you feel more like a family here than anywhere else. Say what you want, ask what you want. I found some of the most helpful people ever, on this site. Information is power.
Seek that second opinion (and more and more if need be) until your questions are answered. There are other treatments when surgery is not an option. Did the dr. tell you why surgery was not an option? placement of the tumor(s), size, etc. First thing is to get that jaundice under control with the stent. I’m praying that will be an option and be successful.
2nd, start getting informed, both on this site and through the doctors. Was radiation mentioned as an option? Some members here have said chemo worked for them and others have said radiation worked better. Each person reacts differently to each treatment option.
Don’t give up yet….and we’re all here for you too.
Linda Z.July 2, 2010 at 12:39 am #39519rick-kampMember
Welcome to this place. You have had a good welcome and some good advice. I just wanted to share my experience with you regarding Jaundice and stents.
I first became Jaundiced in September 2009, shortly after my diagnosis. I’ve had a stent in place since that time and it has relieved the symptoms of Jaundice since then. Stents can be very good therapy and help tremendously. They have in my case. And they aren’t necessarily a bad indication of prognosis.
Best of luck to you and your family. Please keep us updated on how things are going.
RickJuly 1, 2010 at 10:45 pm #39518lainySpectator
Hello and welcome to our family-JDH. We are so sorry to hear about your Mom.
I agree with the things said above so will not repeat but please don’t give up hope. I would also suggest a second opinion. First things first and they need to get your mom stented. I know the Jaundice is daunting to say the least and makes you feel there is no hope at all.
If the present doctor takes his time to stent, take her to ER at another hospital and most likey she will get stented. They will not send her home like that. Then you start knocking down the walls one by one. Ask the doctor why she is not a candidate for surgery. And just so you know there are people here who chose to do nothing and have beat the odds for a couple of years now. Like Kris says, who knows what developments are right around the corner. Surgery is the ONLY thing to do in some cases not all and in some Chemo is the way to go. Perhaps you should also ask your doctor if he has treated many CC patients and that will help you decide what to do. Take a deep breath, we are here for you and soon it will all come in to focus and then the fear will subside and like Marion said the fight will kick in. Please keep us posted.July 1, 2010 at 10:20 pm #39517jemimaMember
A few months ago I was at the stage you are at now, but as Marion has said first the crying then the fighting. I am definitely at the second stage and I am sure that once you get your head a round it all (if that is possible) then you will be too.
My mum has been deemed inoperable by one surgeon but we are going for a second and third opinion. If this doesn’t work then she is lined up to start chemotherapy (gem/cis).
My mum first presented with jaundice and was diagnosed mid Feb 2010. Once they got the stent put in she felt so much better as before that she was bright yellow, nauseous all the time and very itchy. Her first stent lasted nearly 3 months until she got an infection and had it changed. Again she felt better soon. At the moment apart from getting tired more quickly she is like she used to be.
I would definitely ask your mother’s doctor to get the stent sorted asap if it is possible. Has she been prescribed any meds for the nausea ?
Whereabouts are you ?
I am sure that someone on here can recommend a specialist in your area where you could go for a second opinion on surgery.
I have found this forum such a mine of information and support and would not have been able to deal with half of what has happened without it.
My thoughts and best wishes go out to you and your family.
JemimaJuly 1, 2010 at 10:18 pm #39516kristinSpectator
I join everyone else in welcoming you, and I would like to add that the stent will make your mother feel sooooo much better. When bile can’t drain and goes into your blood, it doesn’t just cause jaundice, it makes you feel HORRIBLE– itchy, nauseous, sick, and weak. I went through two months of that. They couldn’t give me a stent, but instead I now have an external bile drain to a bag on my side, and that makes a huge difference in how I feel. So I agree with Marion, you should try to get them to place a stent as soon as possible.
Wishing all the best to you and your mother–
KristinJuly 1, 2010 at 10:00 pm #39515marionsModerator
JD….I would like to follow Kris, Gavin, and Andie in welcoming you to our site. They have given great advice already and I concur with everything said so far. There is a saying: First your cry…and then you fight. So, go ahead..let those tears roll and then get your boxing gloves on. I also believe that another professional opinion is warranted. This disease is rare in fact, it is much rarer the pancreatic cancer therefore, I believe it to necessitate various expert opinion.
But first I would push for a stent as it will bring relief to your Mom. The bilirubin needs to have the ability to drain as presently it appears to be backing up. This most likely is caused by a blockage.
Everyone on this site has experienced this disease first hand and will support you, listen, and share with you the knowledge they have gained. I can’t think of a greater bunch of people than the ones whose comments I read here daily.
I am sorry that you had to find us or the obvious reasons nevertheless, I am glad to see you here. We are with you, all the way.
All my best wishes,
MarionJuly 1, 2010 at 9:02 pm #39514andieSpectator
My Dad was diagnosed in April and like your Mom it is inoperable due to location, artery/veins. My Dad was first told he’d got a few months to live but then another hospital said he could be treated with Chemo which will hopefully keep it at bay. They can’t say how long for as no one has an expiry date, so we take it a day at a time and each day my dad is a survivor.
We have had a rollercoaster of a ride the last few months. After being admitted into hospital for what they though was gallstones we found out he had CC. Jaundice was his only symptom. After failed attempts via ercp and pct for a working stent Dad was transferred to another hospital where they managed to fit a metal stent. After a few weeks his jaundice went and he regained the weight he lost whilst in hospital. We finally get a date for Chemo and his bilirubin decides to rise again and Chemo is cancelled. We are now waiting for Dad to have his stent unblocked next week.
Once your Mom gets her stent she will feel so much better.
We try to stay positive, they said his tumour was small and luckily decided to grow in a place so he became jaundice. For it’s size, if it had grown anywhere else he would not have had any symptoms and would have not been spotted so early.(just bad luck it grows by the artery!!) We were told it’s slow growing and my Dad through all this has felt well, still has a big appetite, and manages to do everything he did before he was diagnosed. So we focus on these, the positive things to help us get through it. Our family have always been close but now we are closer than ever. I am an only child but the support from aunties, cousins and friends has made me realise how lucky we are as a family to be close.
This site and the people on here have helped me get through the last few months. I stay positive for Dad and so far he is positive too, but when I have my off days or worries I can’t burden my parents with about CC then I know I can come on here and someone is there for me.
Sending hugs and best wishes, we will all fight and get through this together.July 1, 2010 at 8:21 pm #39513jdh2000Member
It’s odd – you are strangers and yet just reading your replies I am sitting her at work crying. What an emotional ride this is.
Thank God for support like this and people like you – it helps to know I can reach out and someone will be there on the other end…
Thank you.July 1, 2010 at 8:12 pm #39512devoncatSpectator
Welcome to the site. We are a great group full of support, knowledge and advice. Not to mention we are all very beautiful inside and out.
The problem with cc is that it is often detected in its later stages. That makes treatment difficult. That said, everyone is going to pester you to get second and third opinions because this is such a rare disease that doctors are often scared or unsure how to procede. Many people here have been told no to surgery by one doctor and yes by a fourth.
Chemo response will be measured by scans. I felt worse on chemoradtion and my doctor only giggled and said it was the treatment, not the cancer that was causing problems. So you wont be able to tell just by how your mom feels. Some blood tests offer insights, but are not 100% reliable.
No one knows how long we or your mother has. Some people live years some months and there is no way to tell how your mother will do. Keep positive and laugh and play. It might not make your mom better, but she sure will feel better.
Hang on. This is a rollercoaster of a cancer. There will be highs and lows, but our members will be here for you.
KrisJuly 1, 2010 at 8:05 pm #39511gavinModerator
Welcome to the site, but I am sorry that you had to join us all. My dad was diagnosed in the summer of 2008 and his CC was also deemed inoperable. The reason being that his tumour was far too close to the portal artery and he would not have made it through the surgery. Did your mums doctor not explain why surgery was not an option for your mum? Also, have you looked into getting a second or third opinion for your mum?
You are right in that all of this is confusing, but you are doing the right thing in reaching out here and I know that all of us here will help you in any way that we can. My dad also had the jaundice and that was the first we knew that anything was wrong. Once diagnosed, he got a metal stent inserted and this helped to get the bile flowing again and releived his jaundice. Once the stent was in, my dad felt an awful lot better. Have your mums doctors spoke to her about the jaundice just now?
Please do not give up hope. There are many members here who have been fighting this for years and I am sure that they will be along soon to share their experiences and knowledge with you soon. As to how long does your mum have left, no one here can answer that question for you. Is your mum due to have another CT scan soon?
Please keep coming back here as you will get a load of support from all of us here.
My best wishes to you and your mum,
GavinJuly 1, 2010 at 7:50 pm #3721jdh2000Member
My mother was diagnosed early June – Stage 4. She is doing chemo, gemzar and cisplatin combo, they said surgery is not an option.
I am now thinking we were stupid not to push for surgery – because everything I am researching says it is the best thing to do.
At any rate – although I am older and have my own children – I am not ready to be without my mother.
My father passed away 14 years ago from pancreatic cancer.
Are we doing enough? Should I be pushing her doctor for more reasons as to why they did not try surgery…
Oh God – it’s so confusing…
She is jaundice now as well – and there is discussion of putting in the stint. She is nauseous all the time and does not want to eat.
Is there any hope at all? How long does she have? How will I know when the end is near? How will I know if the chemo is working?
God bless all of you – patients and caregivers alike – I imagine I will be back someday as a patient too, considering my genetics…I just pray for us all to have the strength to face what we need to face.
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