Hoping for the best

Hi Kabrien

I'm very sorry to read that your husband has had pancreatitis with complications which is preventing him from having his chemotherapy. This must be a very difficult time for you both.

I don't have the experience you're looking for but noticed that you hadn't had any replies to your post yet. By responding to you it will 'bump' your post back to the top of the discussion list where hopefully it'll be seen by a member of this group who can share their experience with you.

I typed 'pancreatitis' into the search bar at the top of the page and found these previous posts which mention it. I noticed that both EllaRed44 and Andyxxx have recently posted about it so I'm 'tagging' them into this reply and hope that they'll be able to pop on and talk to you.

While you're waiting for replies it would be great if you could pop something about your husband's diagnosis and treatment into your profile as it really helps others when answering or looking for someone with a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

I hope that your husband's treatment will be able to start again shortly.

x

Yes, I had a tough time. My first symptom was jaundice so my GP referred me to a GI. He performed an ERCP to insert a stent into my bile duct. By his own admission, he used too much contrast/dye and this caused me to have pancreatitis. I was admitted to hospital for 10 days and they sent me for a CT scan and MRI. Because of the pancreatitis, I developed a 2 litre pseudocyst on the tail of my pancreas. I had to wait for 3 months for it to solidify before it could be removed. For three months I had a fever of 40 degrees and could only take paracetamol every 6 hours as well as antibiotics. I then had three operations over 6 weeks to remove it. After another 6 weeks I was able to have my Whipple surgery and started chemo about a month after that surgery. That was just over three years ago.

I hope this helps!

Thank you latchbrook for tagging me!

Thank you Andyxxx that is pretty  much how my husbands start of this terrible condition started. He has never had surgery for cysts but keeos getting collections and drains. The weight loss is terrible though and the nausea. He can't eat when he gets a fkare up. He was just admitted to  hospital for the 5th tine on Monday and waiting for a new drain on fluids and antibiotics. I am considering getting a private consultant as sometimes i feel he isn't getting the best attention. Any thoughts would be appreciated. 

I would definitely seek a second opinion. There are specialist centres for Cholangiocarcinoma. You can either have your current consultant or GP refer you for a second opinion or have the first appointment as private and then switch. This is a very useful website for the only Cholangio charity in the UK.

https://ammf.org.uk/specialist-treatment-centres/

There is lots of good information on the site. I have directed you to the Specialist Centres bit please have a look around.

If you have any other questions please let me know.

Thank you Andy xxx, yes the Belfast City Hospital is on the list which Nark has an appointment wuth the  oncologist in 2 weeks its just this  pancretitis that holds everything up so i hope by then this latest flare up will be over and he can keep the appointnent. Just a question hooe you don't mind did you have to be tube fed? they seem reluctant even though Mark can't eat.

Hello! Sorry for the delay. No, I was only put on TPN after my Whipple surgery due to complications. While I had the pseudocyst, I lost a lot of weight as the mass pressed against my stomach so I felt full after a couple of spoonfuls. Generally had a liquid diet so I could eat more but overall I lost about 30 kg in those 3 months. I was 108 kg to start with and needed to lose weight for the surgery. Would have been nice to have lost it another way! 
Unfortunately, the best treatment for the pancreas is rest. If you feel that the weight loss is too great, perhaps talk to your doctor about TPN, but I think it may require hospitalisation. A catheter has to be surgically inserted and the creation & management of the food has to be kept in a sterile environment.

Wishing you both all the very best!

Hi Andy, thankyou for your reply it was really informative, the consultants are talking about discharging Mark but he is going to refuse as he still can't eat and the new drain is uncomfortable. I just want soneone to do more. All the things i read on the internet just dont seem to be offered toi Mark. If nothing is forthcoming ie a plan of treatnent i will contact a private specialist while Nark is still in hospital, i hope that is possible.

Dee

Hi Dee,

I’m sorry you’re not getting the support you need. The consultants should not discharge without a plan for Mark to be fed. In my experience, consultants will only work on one step at a time so it’s difficult to talk about options beyond the next step.

You should be able to arrange a private consultation with another specialist. I did that and it upset the GP & co and I got a lecture about “that’s not the way to do things” but what matters is getting the best care available and if that ruffles a few feathers, then so be it.

If there is anything I can do in terms of advice and my experience, please let me know.

All the very best.

Andy

• Thank you Andy, i will just pay for the consultant so i can bypass the gp who i have to say hasn't contacted Mark sinxe this all started. I just want the pancreatitis sorted so that he can eat and  get strong for the wipple op so i have no problem ruffling a few feathers. I wiould hope that  private consultant who no doubt know Mark's consultant as they both work out of the sane hospital would collaborate in the best way forward. Either way i will refuse to take him home. 

Best of luck. For what it’s worth, I think you’re doing the right thing and the best course of action.