Pancreatic cancer or bile duct cancer?

[belgrade]

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 xx. 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]

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]

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 xx? I myself had my whipples at the xx 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]

Thank you both for your replies.

My husband's appointment for the scans in xx 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 xx 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 xx, 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]

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]

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

Edited September 8, 2014 by J_T

[Margey]

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]

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 xx 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]

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]

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]

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]

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]

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]

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]

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

[belgrade]

Received feedback from the MDT meeting this afternoon. Dave is to be referred to an oncologist at our local centre in Cardiff for chemotherapy. It was explained that he could go to Birmingham for this but we had discussed this option with the consultant last week. The nurse also said that it was unusual to give feedback over the phone but this would make the follow-up appointment next week unnecessary. I asked about his tumour marker results and she said that the CEA and AFP were both normal, suggesting that there was no bowel involvement, but his CA-19 marker was 520. There is also a suspicion of "something" in the liver, but she stressed that this was also only a suspicion. When asked if a liver biopsy was necessary, she said no but detailed information would be passed on to the GP and the oncologist in Cardiff. Given that this referral will take another few weeks and many questions still remain unanswered (MRI result and biopsy results) we are wondering if we should still keep the appointment next week or just wait to see the oncologist and what questions need to be asked. We are new to all this and any advice would be gratefully received.

Hilary

[J_T]

Hi Hilary, well its good they've given you feedback from the MDT. Is XX a specialist centre? XX sounds like a bit of hike from XX for chemotherapy but that's entirely your choice of course.

Does it generally take a few weeks to be referred? We did wait a few weeks but that was treatment couldn't start anyway due to Ray having jaundice.

If you don't get an early appointment through for your local oncologist maybe keeping the appointment for next week might be a good idea. You will have had time to formulate some questions and face to face meetings are always better I think.

Good luck

Julia

[Cathy]

Hi Hilary,

Good advice from Julia. Several weeks is a long time. Did they actually say that it would take several weeks??

If they did then I would keep the appointment for now. You may find that you have an appointment in Cardiff quickly however - I hope so.

Cathy x

[LindaH]

Thank you Mark, much appreciated. Linda

[Slewis7313]

Hi Hilary, I would agree with the others that you should keep next week's appointment in Cardiff as they must surely be in possession of (or can obtain) the relevant information regarding outstanding test results. It may be worth contacting them to state that you wish to discuss this as soon as possible. We have found a little pressure focuses them and they are usually prepared to flex a little to reassure us if we have questions. It does seem strange that they have been shipping you off to xx for treatment when there are two specialist units in South Wales.

Let us know how you get on.

Steve

X

[belgrade]

Good morning all,

Thankyou for your advice. Dave has decided that he doesn't want to go to the follow up appointment in XX next week but will ring them tomorrow to make sure that the referral to XX has been made, so that we, and his GP can start chasing them up. He has started eating a little more this week but his appetite is still very poor and he seems unable to eat meat of any kind. I have been reading many of the comments on this site relating to the use of creons. Would these help to promote appetite as well as aiding absorption of food or would steroids be a better option? Sorry to ask again but any advice would be gratefully received.

Best wishes,

Hilary

[LindaH]

Hi Hilary,

I truly struggled at first with Creon. Jeni and Dianne the nurses on PCUK encouraged me to continue with them as my problem was malabsorption, simply I wasn't taking enough Creon, so the loo was my best friend most of the day, I dare not move too far away.

I started on 10000 for breakfast which was / is cereal combined with fruit (by the way, you don't need to take any Creon with fruit) but this wasn't enough because it's the fat content in the food we eat which we need to keep under control with Creon and of course with taking milk with my cereal, there is my fat content.

It's hit and miss at first Hilary, you need to experiment to get your dosage right, but the main thing is, you cannot take too much, it won't do you any harm if you do, it just comes away naturally.

So, now I take 25000 units with breakfast, 25000 with a sandwich at lunch plus 10000 if I include a yoghurt, and 25000 maybe even 50000 for my evening meal depending on what I'm having and it's fat content.

I'm so pleased I persevered Hilary because it has changed my life. Plus, my appetite is back to normal....maybe a little too much....weight gain eek.

Hope this helps.

Linda x

[Slewis7313]

Hilary, I have been on CREONS since first diagnosed in December and they certainly stopped my weight loss. I do not however believe that they are intended to stimulate appetite. I found that my appetite only improved after the first round of chemo. For information, I have a 40000 tablet with main meals and a 28000 with snacks.

Hope this is of use!

Take care and good luck.

Steve

[belgrade]

Hello all,

I read the posts every day and have been encouraged to see how well many of you and you loved ones are doing. I too, have learned so much about this insidious disease and the need for improved funding to raise public awareness and fund research. I thought I would provide an update on my husband's situation. Dave was referred to the cancer hospital in XX and was due to start chemotherapy this week. Unfortunately, his condition has deteriorated and he was admitted to our local acute hospital 2 weeks ago with sickness and dehydration. A syringe driver was fitted in order to deliver anti-sickness medication and pain relief more effectively. However he developed an abcess in his arm following re-siting of the syringe driver which led to a severe infection which he is currently battling. He has now been referred for palliative care at a small unit near us. It is almost 5 months to the day that he was first admitted with jaundice, mis-diagnosed in xx , referred to xx , then xx where he was due to start chemotherapy this thursday. Apart from a stent insertion he has received no other treatment and the care he has received must now be questioned. I believe there is a vast difference in the management of pancreatic cancer in different areas of the UK and this situation must be addressed in order to give all patients a fighting chance with this disease.

Hilary

[Cathy]

Hi Hilary

Than you for updating us but I am so sorry to hear that Dave has been so poorly. It must be sooo frustrating when his treatment was so finally close to starting. Here is hoping they manage to sort out the infection quickly.

I agree re the difference in treatment - how difficult could it be to get a bit more consistency?

I hope you are looking after yourself and getting some support too.

Cathy xx

Edited September 5, 2013 by Cathy