A forum for family, friends and carers of pancreatic cancer patients

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belgrade
Posts: 157
Joined: Fri Jul 05, 2013 11:53 pm

Pancreatic cancer or bile duct cancer?

Postby belgrade » Tue Jul 16, 2013 5:51 pm

My husband was admitted to hospital in early April with jaundice thought at first to be an infection or a gall stone. Within a week he was transferred to a more specialist hospital to have a gall bladder drain, after an ERCP failed due to obstruction in the bile duct and his bilirubin was 500. He went downhill rapidly with kidney and liver failure, bilirubin over 700 and pancreatitis. Following a number of scans, MRI and insertion of a stent, we were told the most likely cause was bile duct cancer but nothing could be done until his jaundice subsided and his liver and kidneys improved. By the start of May his kidney function was almost back to normal and he was sent back to our local acute hospital to await a liver biopsy. His bilirubin gradually improved but he has lost about 4 stone as he's not eating, and very weak. Acute hospital reluctant to carry out biopsy and referred him to Birmingham. Consultant there requires more investigations but suggests bile duct cancer or tumour in pancreas compressing the bile duct. He is now very weak, as the last proper meal he had was end of March, has nausea and sickness at times but no pain. Trying supplement drinks etc but I'm at a loss to know what to do.

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: Pancreatic cancer or bile duct cancer?

Postby Cathy » Wed Jul 17, 2013 5:45 pm

Hi and welcome to the forum,

I am sorry you have had what sounds like an intensely frustrating experience and that your husband has been so poorly. Clearly you need a diagnosis and answers quickly. I'm afraid I can't give you any advice from my own experience but I would be demanding to know when you can expect this.

Have you been alloted a key worker (possibly unlikely if they haven't even come up with a diagnosis)? Have you an advocate who can do some shouting for you? Your MP for example? Your GP??

I'm sure others on here will be able to provide you with better advice. Once you have a diagnosis then with appropriate treatment hopefully your husband should improve his appetite.

You can also contact the nurses on this site if you need advice. They are always extremely helpful. Tel: +44 (0)20 3535 7099 or email: support@pancreaticcancer.org.uk.

Best of luck.

Cathy xx

Margey
Posts: 10
Joined: Wed Sep 22, 2010 5:48 pm

Re: Pancreatic cancer or bile duct cancer?

Postby Margey » Thu Jul 18, 2013 8:31 am

I am so sorry to read about how poorly your husband is and what a torrid time you are having. I think that however bad things are it's the uncertainty of knowing what you are facing that makes a difficult situation even worse and leaves you feeling so helpless. Have you got dates yet for the investigations at Birmingham? I myself had my whipples at the QE Birmingham and can't speak highly enough of the doctors there. So I hope that is heartening for you. Did you meet the clinical nurse specialists at your appointment? We always found them a great support and were happy to talk to us on the phone and push things forward when we concerned about anything. So do please try and contact them because the sooner you have a diagnosis the better.Please keep posting to let us know how things are going. Good luck.

belgrade
Posts: 157
Joined: Fri Jul 05, 2013 11:53 pm

Re: Pancreatic cancer or bile duct cancer?

Postby belgrade » Thu Jul 18, 2013 12:57 pm

Thank you both for your replies.
My husband's appointment for the scans in Birmingham is tomorrow. I'm rather worried as he will be sedated for the endoscopic ultrasound and the last time he had this procedure he slept for about 6 hours afterwards. As we live more than 2 hours away from Birmingham I think it will be quite a difficult journey for him. All scans to date have been inconclusive, this has not been helped by the fact that he has a severe allergy to iodine contrast, the only certainty at the moment is that he has a blockage in the common bile duct, relieved now by the stent, which appears to be working well. The immediate concern is his total lack of energy and reluctance to eat. I did contact the nurse in Birmingham, who has been very supportive, regarding the use of medication to stimulate his appetite. She has suggested a course of steroids, but as he is diabetic, thinks it better to wait until his follow up appointment with his consultant next week. he is obviously malnourished and I wonder is this due to lack of food or the cancer itself.

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: Pancreatic cancer or bile duct cancer?

Postby Cathy » Thu Jul 18, 2013 3:22 pm

Have you had any contact with MacMillans yet? Others on here have found them very useful.

If your husband hasn't eaten properly since March (poor guy!) then that could also account for his lack of energy.

My partner is also diabetic but luckily has never had a problem with lack of appetite and isn't on steroids at present as he is in a treatment break. However, his diabetes nurse has said that if he goes back onto steroids that they would adjust his insulin accordingly so being diabetic wouldn't preclude your husband from taking steroids.

I'm really glad you have the scans booked for tomorrow so hopefully you will have some firm diagnosis and action plan for treatment in the very near future.

Keep us updated.

Cathy xx

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: Pancreatic cancer or bile duct cancer?

Postby J_T » Thu Jul 18, 2013 5:55 pm

Hi belgrade
Hope you get some answers following the scan. Having to travel that far is far from ideal. We initially had a long journey to get Ray to appointment but thankfully our local hospital was able to provide the clinic and chemotherapy treatments there and he now he just goes to the major hospital for scans.

Ray also had a period of not eating, not as long as Dave granted but he did regain his appetite so here's hoping things start improving for Dave once he gets a proper diagnosis and treatment can commence.

Best wishes
Julia
Last edited by J_T on Mon Sep 08, 2014 5:57 pm, edited 1 time in total.

Margey
Posts: 10
Joined: Wed Sep 22, 2010 5:48 pm

Re: Pancreatic cancer or bile duct cancer?

Postby Margey » Fri Jul 19, 2013 8:50 am

Thinking of you and your husband today Belgrade. Hope the scan and journey go ok. Good to hear that you get the results next week.

Margeyx

belgrade
Posts: 157
Joined: Fri Jul 05, 2013 11:53 pm

Re: Pancreatic cancer or bile duct cancer?

Postby belgrade » Sat Jul 20, 2013 10:54 am

Hi all,
Thank you for replying to my posts and for the good wishes. I now find myself drawn to this site not only to research the experiences of others but as a means of support for myself. I can relate to so many of the comments I've read. I too feel very alone and feel that we have been cheated out of our retirement together. So many plans that will probably not be realised. The beautiful sunshine,smell of barbecues and holiday adverts all seem to reinforce a lifestyle that we are not part of anymore! Well thats enough self pity for now.....feeling down because our visit to Birmingham yesterday gave us the news we didn't really want to hear. Scans went well and my husband was fine on the journey. However the doctor performing the EUS asked if we would like him to find out if one of the surgeons was available to go through the scans. This was gratefully received and we met one of the senior consultants. He did not have the MRI results but explained that the EUS revealed a 4 x 3cm mass in the head of the pancreas which involves the mesenteric artery, therfore surgery looks unlikely. The biopsy and MRI results should be back next week for the appointment on thursday and a proposed treatment plan. Let battle commence!!! Hilary x x

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: Pancreatic cancer or bile duct cancer?

Postby Cathy » Sat Jul 20, 2013 11:19 am

Hi Hillary

I'm sorry you had the news you didn't want to hear but it was good they were able to give you the news quickly. You've both had so much hanging around not knowing.

At least now they can start treatment hopefully very soon and I am sure when they do your husband will start to feel better and get his appetite back. As you say, let battle commence!,

All the very best

Cathy xx

Margey
Posts: 10
Joined: Wed Sep 22, 2010 5:48 pm

Re: Pancreatic cancer or bile duct cancer?

Postby Margey » Wed Jul 24, 2013 10:14 pm

Hi Hilary
Just wanted to say I will be thinking of you tomorrow as you meet the consultant and are told the treatment plan. I can only speak highly of the consultants and nurses there. Please let us know how it goes.

Margey xxx

MSH
Posts: 228
Joined: Tue Apr 30, 2013 11:03 pm

Re: Pancreatic cancer or bile duct cancer?

Postby MSH » Thu Jul 25, 2013 8:22 am

Hello Hilary, your husband's presentation is not too dissimilar to mine. I too had a 4x3 cm mass in the head of pancreas involving the mesenteric artery, and was initially thought to have cholangiocarcinoma. My oncologist reviewed the findings and decided it was more likely to be pancreatic and I am currently symptom free after seven cycles of Folfirinox.

I hope your husband is well enough for this regime, as there are studies showing over 25% of locally advanced disease so treated can become operable and potentially curable.

belgrade
Posts: 157
Joined: Fri Jul 05, 2013 11:53 pm

Re: Pancreatic cancer or bile duct cancer?

Postby belgrade » Thu Jul 25, 2013 12:10 pm

Thank you Margery for your good wishes. Unfortunately, the hospital called on tuesday to say that Dave's case was to be discussed in the MDT meeting on thursday afternoon so his appointment has been postponed until next thursday. Makes sense and hopefully we should have a treatment plan.
Best wishes,
Hilary

belgrade
Posts: 157
Joined: Fri Jul 05, 2013 11:53 pm

Re: Pancreatic cancer or bile duct cancer?

Postby belgrade » Thu Jul 25, 2013 12:33 pm

Thank you MSH,
Good to know you are now symptom free. I sincerely hope Dave will be well enough to start some sort of treatment. He was hospitalised until 2 weeks ago, during which time he has lost over 5 stone in weight and has no appetite at all. He never feels hungry and says he feels full after only a few mouthfulls of food. I'm not sure if the accompanying weakness is caused by his condition, or the fact that he has quite literally starved himself since April. His GP has prescribed Fortijuice and Calshake which he is struggling with at the moment, but his consultant has mentioned the use of steroids to stimulate his appetite.
Best wishes,
Hilary

LindaH
Posts: 186
Joined: Tue Jan 15, 2013 8:12 pm

Re: Pancreatic cancer or bile duct cancer?

Postby LindaH » Thu Jul 25, 2013 1:32 pm

MSH wrote :
> Hello Hilary, your husband's presentation is not too dissimilar to mine. I
> too had a 4x3 cm mass in the head of pancreas involving the mesenteric
> artery, and was initially thought to have cholangiocarcinoma. My oncologist
> reviewed the findings and decided it was more likely to be pancreatic and I
> am currently symptom free after seven cycles of Folfirinox.
>
> I hope your husband is well enough for this regime, as there are studies
> showing over 25% of locally advanced disease so treated can become operable
> and potentially curable.

Hi MSH,

In the last part of your statement saying 25% could become treated or curable, is this just from having Folfirinox or could it be with any Chemotherapy treatment? And please could I just ask, when you say you are symptom free (which is fantastic) what does the future hold for you? My tumour is in the head of my pancreas and is deemed inoperable. Sorry to ask in the public posts, but there doesn't seem to be a way of private messaging. I would certainly value your answer. Thank you. Linda

MSH
Posts: 228
Joined: Tue Apr 30, 2013 11:03 pm

Re: Pancreatic cancer or bile duct cancer?

Postby MSH » Thu Jul 25, 2013 1:55 pm

Hi Linda, The studies I have seen pertain only to Folfirinox, though I think some of the treatments were modified.

http://www.ncbi.nlm.nih.gov/pubmed/23657686

http://www.ncbi.nlm.nih.gov/pubmed/22642850

My future prospects took a knock with the discovery of previously occult bony metastases on my recent scan. At some stage the tumour will become resistant to the chemotherapy. I have to hope that before then the mets will have shrivelled to nothing thus hopefully allowing surgery. There is also the Nanoknife which is showing some potential, and currently is being evaluated by NICE.

Mark