The nightmare so far....

[AndAde]

Hello,

My husband was diagnosed with Ampullary cancer (adenocarcinoma) in January 2016. He underwent a PPPD in March 2016, and was prescribed 6 months gemcitabine to mop up any stray cells. He started chemo early June but by the end of August his weight had plummeted to 9 stone from 11 and a half, he was really poorly, and the consultant decided enough was enough, so the remaining 3 months were abandoned. He soon started to pick up, and by the time of his check up in October he was a little over 10 stone!! I mentioned to the consultant that he had a little cough that wouldn't go away, so she requested a scan. At his follow up appointment with the consultant on December 8th, we were told the cancer had come back in his lungs and he was considered palliative.

Christmas passed in a haze, I tried to make it our best, but it wasn't to be. I cooked the worst Christmas dinner in 37 years of marriage!

He was prescribed 3 months chemo, gemcitabine and abraxane. Once again he was really poorly and the weight dropped off him. He was given a month off chemo to try to recover a little and another scan. The scan revealed all the tumours had shrunk so we were really pleased. Our oncologist reduced the dose of chemo and we started another 3 month course. However even with the reduced dose, the chemo affected him so badly, he was bedridden for 5 days a week, refusing to eat and his weight had gone down to 8st 7 pounds, so chemo was stopped again.

He had another scan the other week, the oncologist wants to know where we are now, with a view to having more chemo. He is eating better, has gained a few pounds, and is enjoying the occasional evening with his mates playing cards.

Our next appointment is 17th August with the oncologist, I'm feeling really nervous about it, but trying not to show it.

We haven't asked how long he might have, its something we don't talk about. My darling man has not accepted this at all, he just pretends its not happening. I try and follow his lead, but its difficult.

[Sandiemac]

I really feel for you, having experienced the affect chemo can have with my own husband. Don't be offended but perhaps the time has come to think of quality time over quantity. If he is enjoying life, to a certain extent, then stop the chemo. My husband has had no treatment of

any kind (apart from a replacement stent) for nearly a year, although as far as we know the cancer has not spread.

Each case is different but survival times are slowly getting longer and many people are now defeating the odds. I think there is a lot to be said for your husband's attitude and I have found it's easiest just to take one week at a time and not look too far ahead.

Obviously this is just my opinion and your options need to be discussed with the oncologist when you have the scan results. However, I send my very best wishes to you both and hope it's good news on the 17th.

[Didge]

My partner tolerated folfironox much better than gemcitabine which he couldn't tolerate at all so worth asking if he could try that.

[Justamo]

Hello Ade. So sorry for you and your husband. You don't say how old he is and whether or not he's retired or still working. Not that it's got anything to do with his treatment of course.

My husband completely rejected the diagnosis and adopted a Head in Sand attitude to practically everything when he was diagnosed. We had a dreadful experience with an over-enthusiastic surgeon (Mr Bogeyman) but then were fortunate to see a lovely gentle giant of an oncologist (Dr Feelgood) who prescribed 'gentle' chemotherapy. Peter has had 9 cycles of Gemcitabine without too much in the way of side effects, and the only really major upset has been dealing with Diabetes which we got as a Buy One Get One Free when he got PC.

At the beginning, and before he had been officially diagnosed, Peter lost weight but this was slightly masked because I had put him on the 5/2 diet because he was too fat. The diet worked, and then went on working even after we'd stopped it. When he developed abdominal pain (which he thought was his heart - he had two heart attacks 50 yes, FIFTY, years ago) he agreed to see his GP and so the medical investigations began. I had already put 2 and 2 together and arrived at this site, but Peter resolutely refused to even think about illness and only wanted to know when he could play golf again. At one point his weight dropped to 9st (he was almost 12st when we started the 5/2 - he should be about 10st 7lbs for his height and build).

So our path through this awful illness has been easier than yours. The Gemcitabine didn't cause any really major problems except for overwhelming fatigue, and we are fortunate in having an oncologist who doesn't believe in aggressive treatment for older patients. (Peter is 85 next month).

We had a hiccup a few weeks ago when his stent got furred up and caused an infection but they fixed that with a couple of armfuls of antibiotic and he's OK again now. We see Dr Feelgood at the beginning of September; I get the shivers sometimes because I know this is a one way journey but I only tell the cat about it because as far as Peter is concerned it's business as usual.

In our case, quality of life is one hundred times more important than quantity. Today Peter is playing golf with friends at a course 50 miles away. He phoned me at lunchtime to say he was fine, and that he'd remembered to test his blood and eaten some granola bars so that his blood sugar didn't vanish into his boots at the 14th, and other than a lousy shot at the 8th he was having a great day. And for us, that's what it's all about. He gets to play golf and I do the ironing. C'est la vie.

He has gained a lot of weight. He's back to 12st now, and feels uncomfortable, but I think that's because his diabetes is very unstable and the dose of insulin is maybe a tad high. Our Diabetes Nurse has looked at the numbers and has told us to reduce the insulin when Peter is active but Peter is tired of playing Casualty and no matter what I say just shoves the usual dose into his increasingly large tummy and then forgets about it. So the resulting hypo has to be treated with jelly babies and sugar lumps and more carbs. In order to support him I have gained 1st 5lbs myself and am frantically exercising and swimming to try to lose it. Nothing seems to work and I am letting clothes out to their limit on a daily basis.

Peter and I are with Sandiemac on this. We don't look too far ahead, and take sensible steps to make him comfortable and happy. We're not looking for miracle cures, just taking it bit by bit. It's good to know that your husband is eating again, and enjoying a game of cards. I hope you have some family around you - we don't - and that they can offer you support. And the family on this forum have seen it all, done it all, and can help with anything. I bet there will be loads of responses over the next couple of days.

Take care of yourself Ade, you matter too.

With love

Mo

[AndAde]

Thanks all for the replies, my husband is now 64 and gave up work as a plumber when he first became ill in 2015.

I'm 7 years younger than Adrian, so we had planned for me to take early retirement this year, spend summers at our caravan and enjoy a few winter cruises, but this dreadful disease has put paid to that! We have no children together, but Adrian has a daughter who calls to see him every week. I have lovely nephews and nieces, but is not the same as having sons and daughters. Still you can't turn the clock back.

I'm going to post on here when I feel like running away...its so comforting to know that some people understand how I feel, I can't say much to Adrian as he has enough to cope with.

Personally I don't think chemo is the way forward for us, but if he decides he wants to carry on with it I'll support him as best I can.

Thanks again!

Andrea xx

[Justamo]

Hello Andrea,

You post on here when you're sad, when you're happy and when you just want to punch someone or burst into tears and run away. I know what you mean about not being able to talk to Adrian, but perhaps later on you can share with him about how you feel. Peter and I haven't had that sort of conversation because, like Adrian, he's pretending that it's not happening.

I was 100% against surgery but didn't tell Peter how I felt because I didn't want to influence him either way. Lots of people had opinions though, and Peter tended to agree with the last person he'd spoken to. So he was very confused, especially when people told him about their cousin's son-in-law who only had two chemotherapy sessions and was cured. Or had an operation and was cured. Or only ate beetroot for a year and was cured. In the end he made up his own mind and once he'd decided I told him how I felt.

Aggressive treatment isn't for us. I hope your appointment with the oncologist goes well, and hope you pop up on this forum whenever you want. We all know exactly how you feel.

Take care

Love Mo

[Marmalade]

Hi Andrea,

I'm so sorry that you have had such a horrible time. We all completely understand the roller coaster ride and you will find many on here who will empathise with your husbands refusal to engage on end of life discussions.

I had a thread on here about "Our journey without chemo" if you want to see what another option might be like. I am keen that patients are told about ALL options including no treatment, or light palliative chemo only. Many people find it hard to discuss their feelings about end of life which is why it's important to engage with the local GP and palliative care team. They are far more experienced in raising these issues and often the patient feels more comfortable having the chat with them rather than family. My husband knew he didn't want any more messing about with but wanted reassurance about the ability of the doctors to keep him comfortable and manage pain. He did not want to keep discussing it or having it hanging over him. We decided to have one day when we dealt with how he wanted to be cared for and what he wanted to happen after he died and gather all the paperwork together, the hospice senior specialist nurse, a man in our case, came to chat with us and I was amazed how Louis was able to talk to him. After that we didn't mention it again and we got on with having the bast time we could for as long as we could. The GP can prescribe something to help with his mood if necessary. It's a big thing to deal with and they often get down with the discomfort or anxiety, or fatigue (spoken or unspoken)

I hope you can find a way of having the conversation and I would seriously encourage you to join a caring or coping course at your hospice. Lots of great tips for dealing with symptoms arising from chemo or the progress of the disease. It might give you more insight and some confidence in supporting your husband if you need it. Hospice care is not all about death, it is all about being comfortable and getting the best from the life we have. It's all on the thread.

The other thing I always mention in case you have not already done so, is the acquisition of form DS1500 from the hospital or GP. Anyone, regardless of financial status, diagnosed with PC is entitled to the full Attendance Allowance from the date of diagnosis. I would advise you to let Macmillan's finance team make the claim for you. Just give them a call and they will advise you what to do and they will submit the claim. You may not be short of money but it helps when you may need additional carers or it may allow you to take time off work or perhaps you would like a nice holiday.

You will find there is nearly always someone on here listening and going with you along whatever path your husband chooses.

Marmalade x

[Snowdonwatcher]

Hi Andrea

I was diagnosed with inoperable PC on December 13th 2016.

I have had a course of chemo, and have just finished a course of chemo/radiotherapy.

I am sorry your husband appears to be in a similar boat to me, as one would prefer to be the only one. However, reading this forum shows we are quite a community, and we therefore really need to share, help, and generally stick together.

I am very lucky having family to discuss things with. When the radiotherapy was suggested I was somewhat negative, but we discussed it, as a family, and the two children (both grown up) said they would like me to go ahead. It was my decision, but I went along, and am glad I did now it's all over!

I want to live my dying, but that does not stop me talking over some options with the local Vicar. Burial or cremation, for example

We have sorted out our wills, discussed what to do with my ashes, and I think we will visit a local undertaker to check things out, as if we are sorted before anything happens, the family will have less hassle when they are at a low ebb.

Please don't think I'm being morbid, but yes I am realistic. These things can be sorted, but one can also live life to the full. I may have months, or years, no one knows, but once sorted, one can put it all away (for now) and get on enjoying the day to day. Family, grandchildren, walks, holidays (I hope), evenings on the beach, etc etc.

We are all different. I am open, but yes, I'm sure some would rather file it for now. Whatever the PC person feels comfortable is right - if it's right for them, that's what matters.

Very best wishes.

[PCUK Nurse Jeni]

Hello Andrea,

Thank you for posting on the forums, and I can see that you have had several replies from the supportive family here.

It sounds like your husband is very sensitive to chemotherapy - some folk are.

Should you require any further assistance or medical input, please do not hesitate to contact us - our details are below.

Kind regards,

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[AndAde]

Thanks Jeni will do.

We are enjoying a kinder period at the moment. Next week the dreaded appointment, then possibly more chemo

I'll post again when I have more news xx

[Mags]

Hi andrea

This is my first posting on this site as I am newly diagnosed,17th June, but wanted to say I agree with Marmalde about the financial help available to you.

My Support nurse Natalie put me touch with Citizens Advice and yesterday a lady came to the house went through everything with me and actually made the claim for me over the phone.

I had thought that because I had savings over the required amount I would not be entitled to any help but was surprised at what I could claim for.

Because PC is classed as terminal I am automatically entitled to PIP claim,there are also others that I am entitled to.

Please don't wait to do this any help must be welcomed,even financial, to give us one less to worry about,and it can be used for anything you want, I live alone so for me it will help with paying bills rather than using my savings as none of us know what the future holds.

With best wishes to you and your Husband

[AndAde]

Thanks Mags, we have a wonderful palliative care nurse and she got us PIP, payment from ESA and a blue badge.

I agree that its good to know there is financial support available when PC hits you.

The less we have to worry about the better!

Best regards

Andrea

[PCUK Nurse Jeni]

Hello Mags,

Thank you for your post on the forum - and for taking the step to make your first post.

I am sorry to hear that you have recently been diagnosed with pancreatic cancer.

I am sure that you will find this a place of support from people who have gone through or are going through a similar journey.

If however you wish to contact the nurses, please do not hesitate - the details are in the signature below.

Kind regards,

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[Mags]

Thanks Jeni much appreciated.

As you can imagine right now Im on an emotional rollercoaster some days are good others I feel all over the place but hopefully I will get my head around things soon

Thanks again

Mags

[AndAde]

So the dreaded appointment on 17th was as bad as I thought.

The July scan showed the cancer nodules in my darlings lungs have grown back, and his lymph nodes at the back of his stomach are inflamed. He's had stomach aches for the past few weeks, and I had a feeling there had been some progression.

The consultant, Dr Doom offered us 2nd line chemo, oxaliplatin and capecitabine tablets, but said there's only a 10-20 per cent chance of it working. We were going to say no thanks, but speaking with our palliative care nurse and she said it was worth trying, so we're waiting for the appointment to come through.

The last few days he's been unwell. His appetite has packed its bags and left, so he's sleeping a lot, and refusing to allow me to make an appointment with the GP. I've told him tomorrow if his appetite doesn't return, I'll be on the phone to the doctor as he needs to be in better health before chemo starts again.

Our dog is also annoying me, he won't leave his daddys side, to the point where I now take him for a drag rather than a walk.

Tough times ahead me thinks!

[PCUK Nurse Jeni]

Hello AndAde,

Thank you for posting an update concerning your husband.

I am sorry to hear that the appointment was not positive for you both.

Can I ask whether he was commenced on anything for his appetite then? Although I appreciate you said it was only in the past few days which it has decreased - so it might not have been apparent then.

Certainly, AndAde, there are some options for his appetite - has he ever had steroids? If he is not diabetic, then steroids such as Dexamethasone are very good for a reduced appetite - they cause you to feel hunger. They are also very good for inflammation and pain, also nausea, and they also boost energy levels. So, its very likely that he would benefit on a number of fronts from some steroids.

Certainly, this is something which you can ask your gp about - and its possible that he will feel a lot better on these.

I hope that this is helpful? Should you have any further questions, please do not hesitate to contact us - details are in the signature below.

Kind regards,

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[Didge]

Hi AndAde, sorry to hear things are not good. I do hope some of the suggestions bring an improvement and he is in the percentage that the 2nd line chemo works for. I feel for the dog too! He must sense that his master isn't well. How sweet! Xx

[AndAde]

Adrian had steroids a couple of months ago. They worked brilliantly , and kick started his appetite again. He hasn't had any for about 4 weeks. He was very sick last night, so today I spoke to his palliative care nurse, who had been delighted with his progress, and she said he had to see our GP. The GP called this afternoon, she gave him a thorough examination and put our minds at rest. She thinks he might have a water infection or a problem with his salt levels, so we have nurses coming tomorrow to take blood, she's taken a water sample and wants a stool sample next time he goes!

This evening he seems to be improving, he ate some fillet steak and a few chips then sat downstairs with me for an hour, so I'm hoping its a bug that he is now recovering from, I'll let you know in the next few days xx

[Didge]

That roller coaster again. Fingers crossed things continue to improve x

[AndAde]

Good news on the chemo front, Adrian is coping well with the new regime.

He was weighed after the first cycle and he'd gained a pound so I was delighted!

The consultant is arranging another CT scan after 3cycles to see where we are. I just hope and pray its having a good effect for him.

I've had some technical issues, so I haven't been able to post for a while, but I have been reading the forum when I can. It keeps me sane xx

[PCUK Nurse Jeni]

Hello AndAde,

This is great news to hear - also good to hear that he has gained weight - its often a boost to patients.

Wishing Adrian great success for the CT scan.

Kind regards,

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[AndAde]

Adrian has coped really well with the 2nd line chemo. So much so Dr Doom prescribed another 3cycles and said he had amazed her!!!

Today we've been for another scan. We're seeing Dr Doom tomorrow before chemo on Thursday, so we'll discuss with her when we can have the results.

Adrian is taking it all in his stride, I am far more worried than he is. But that's quite normal.

I'll keep you all posted xx

Andrea

[Veema]

Great that he's coping with the treatment, hearing these positives helps those new to the forum to understand that chemo isn't always that bad.

Good luck with the scan results, I felt that was the most anxious time waiting for results.

Vx

[AndAde]

What a mad few weeks we've had.

Adrian was admitted to hospital with an infection. He had intravenous antibiotics then was discharged with 3weeks of tablets. The day after he was discharged we had to go for the scan results, we were braced for bad news, but were amazed to be told the tumours in his lungs have shrunk and his lymph nodes were back to normal size!

This was the best news we could have hoped for, so we've had a pleasant Christmas, despite Adrian having a few 'not so good' days. Its all we can ask for.

Sending good wishes for the new year to all.

Andrea xx

[Didge]

That’s great news Andrea. Happy New Year! X