my husband

[Juniper]

Hi

My husband who is 55, was diagnosed with stage 4 pancreatic cancer as primary and secondary liver cancer at the end of Jan 2013, an op was not an option, chemo would be given, he was home from hospital 2 weeks when he was jaundiced and had to readmitted to get a stent in to drain the bile, chemo still has not started and he has been back home for the past 2 weeks. He is now having problems eating, no appetite, was in a lot of pain in his back but that seems to have lessened, going to hospital on Thursday so hopefully will hear if chemo going to get started. As like some of the other posts he was told that it was inoperable and palliative care would be offered when he was by himself, to say the least we are all devastated with this news, considering he was a fit, healthy young man, and was only admitted to hospital with an upset tummy which they thought was an ulcer. Has anyone else any idea how we could improve his appetite and give him some strength.

[KATB]

Hi Juniper,

Welcome to the board. I'm so sorry to hear of your husband's diagnosis. I'm sure you'll find lots of excellent advice and support here, especially from people more experienced than myself!

My dad was diagnosed a month ago and had his stent procedure done almost 3 weeks ago. Like your husband we are still waiting for chemo to start but it cannot get under way until bilirubin levels are right down. As I understand it, they drop quite rapidly after the stents are inserted but the reduction is a curve and it can take a while for it to fully recover once it gets low.

It takes a while for the appetite to return after the jaundice too but my dad is starting to eat a lot better now. He is also having Nutrisip drinks to supplement his eating - have you got any of those? If not, ask the specialist nurse or your GP can prescribe them (you can't buy them off the shelf or over the counter). There's a really helpful page on this website with diet tips - check that out too.

As for building strength, we have got dad out doing a walk, about 1.5 miles, most days and we are encouraging him to get his own drinks and snacks now so that he's up and about rather than constantly sitting.

Have you had any discussion about which chemo regimen he might have?

Keep posting - this is a fabulous place for hints and tips and also for emotional support as everyone here will know just what you are going through.

Kate

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[Juniper]

Thanks Kate, we do have the energy plus drinks, we had milk ones but Andrew could not take them anymore, so they were changed to the juice which he is managing to tolerate, he has now been prescribed dexamethasone to try and stimulate his appetite, so here's hoping. After getting the stent has taken Andrew a long time to recover from this, and is still fairly weak, but hopefully with his appetite improving his strength and mobility will be much better. I agree that there is extremely helpful information on the forum and the website which I no doubt will help and support me through thisx

[KATB]

Hi Juniper,

It sounds like you are doing the right thing. If he's not eating much then I guess it's about eating the right things when he does - so high calorie foods but also nutritious. As you might expect, the oncologist told us patients who eat a healthy diet and lots of fruit and veg tend to do better so I'm always prompting mum to add broccoli and spinach to just about every meal!

Don't hesitate to contact the support nurses on this website - you can either phone or email. I had a long conversation with Jeni a couple of weeks ago when we felt very abandoned and in the dark and I also sent a few emails to Jeni yesterday and she got back to me with fabulous answers.

Kate

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[Juniper]

Hi Kate

Thanks for the information, today is a good day, I just wish there were more of these lately, he started on the dexamethasone yesterday and he seems a lot brighter today and they have also taken away the slight pain in his back, so that is good, he has actualy managed to eat a bit more this morning, hope this continues, we are going to the [Name removed - moderator] Hospital tomorrow so hopefully we will be told when his Chemo is going to start.

I know how you feel when you said you felt abandoned, that is how I am feeling, I just think now he has been discharged from hospital then he has been forgotten about.

Hopefully tomorrow will bring some good news.

Jx

[KATB]

Hi Juniper,

Glad your husband is feeling brighter today. Hopefully that will now continue as he starts to eat a bit better.

Let us know how you get on at the appointment.

If you feel in the dark about what is going on, Macmillan can help with that too - they are very good at being a 'go between' so do get in touch with them. They are a fabulous resource.

Kate

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[DRAD3]

Hi Juniper - welcome to the forum, just so sorry that you have to be here and for your husband's diagnosis. Great to hear that he is feeling brighter today - the dexamethasone (steroid) will be doing its magic and I imagine the jaundice will also be subsiding too - all good news for him feeling better and his appetite returning. Don't worry too much about what is best for him, just let him have whatever he fancies - that may be something he never asked for before - my husband took a new liking to rice pudding, ovaltine and fruit flans - easy to digest but filling and calorific - after years of me not allowing too much naughty foods, he had whatever he wanted! I hope your husband's pain is being managed OK - is he on MST (morphine given in 12 hour intervals to allow constant pain management) - important his pain is kept under control. As Kate said, they won't commence chemo until the jaundice is at an acceptable level, it can seem an intolerable wait to get to this but obviously not safe to proceed with chemo until your husband is fit to take it. The oncology teams do a wonderful job at looking after your best interest and will never proceed with treatment without checking everything first - reassuring. I am sure you will find out more tomorrow and also be given lots of contact telephone numbers so you won't feel as alone - ask for this if they are not forthcoming - oncologists name and number, clinical nurse specialist and also ask them for the contact info for macmillan - now is the time to get a good support system in place - this can also be very reassuring at a time when you can feel quite isolated and afraid. At least you have found us so you can be sure that we will help you every step of the way.

Take care of yourself too, won't you and keep posting.

with love

Deb

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[PCUK Nurse Jeni]

Hi Juniper,

So sorry to hear about your husband's diagnosis.

As you have already, you will find this forum very helpful, and there are many on here with knowledge and experience of the disease.

Do remember, if you have any questions or concerns about the treatment for pancreatic cancer or disease in general, you can call us on the support line: (020) 3535 7099, or you can email us at support@pancreaticcancer.org.uk.

We are more than happy to help you with any questions.

Jeni and Dianne,

Support Team.