T4 inoperable pancreatic cancer

[JoTatham]

Hi there, I am new to this site....My partner has just been diagnosed with T4 inoperable pancreatic cancer...He is 62 years old, and up until a couple of months ago hadn't had a days illness in his life....He recently started complaining of stomach & back ache, lost all appetite & drastically lost weight. His doctor was treating him for IBS until he turned jaundiced....Then an emergency admittance to hospital followed by a CT scan showed that he had the above...He has had a stent fitted to relieve the jaundice and last Saturday started his Folfirinox chemotherapy....6 hours in the day unit with drug infusions followed by being sent home with a pump attached to his picc line, which was stopped & flushed out be a district nurse yesterday (Monday)....The cycle starts again Saturday week.....I am so frightened by all of this....He has no appetite at all and therefore, despite everyone's good intent, is eating very little....He spends a great deal of time sleeping. He is on slow relief morphine morning & night & liquid morphine if needed as a top up during the day....I wonder if anyone out there can relate to this treatment & tell me honestly how they, or anyone they know got on with it?....We have been told that untreated, life expectancy is 4-6months, but with "successful" chemo 12-18months.....I don't quite know what they mean by "successful", as he clearly isn't going to recover from this dreadful disease.....If anyone else has gone down this path, I would love to know how you found the Folfirinox chemo to be.....All honest replies would be gratefully accepted. Many thanks x

[honjen43]

Hi Jo, Welcome!

When my brother in law was diagnosed, they gave him a similar timeframe but said that chemo was not an option. The doctor's prognosis was correct. He was 10 yrs older than your husband.

He already had most affairs in order so that was not of concern, but like your husband, he had no energy and just stared at the wall and did not eat even if given something.

I guess part of the behavior is due to the tumour, part to shock of diagnosis and rest probably due to chemo.

It seems to be important to feed the body and keep it strong to fight the rigours of treatment and the disease. I have another friend 10 yrs younger, who has had success with chemo and is thinking or returning to work. He has survived the prognosis. He was well to begin with and had not lost much weight. The meal supplements worked with the standard treatment for him.

I would suggest you ask the specialist to give/prescribe fortified meal replacements for your husband, (if he hasn't already). Try and persuade your husband to take them! They may not taste great as some seem to have an unnatural taste. Do what you can. Even Complan or similar may give him a boost.

Other than that, boost his intake of icecream, yoghurt, cream as all add calories! You have to think differently about diet rules now. Balanced meals are less important than calories in, no matter what they are!

I hope he will come out of his fog of despair and pain soon and that he will see the wisdom of taking your advice - and the chemo. It is a horrid disease and a horrid battle. Hopefully there will be a period when you can both plan something together to look forward to! Maybe start now!

Hope, perseverance and determination and shear "bloody mindedness" can go a long way towards calling a truce. Sadly, this thing is not good news however far along the road it is found!

I have a friend here who has also just been diagnosed out of the blue, sore back being main concern.

These suggestions come from my experience looking after my own husband with a brain disease, from family fighting cancer, and from contact here on this site and the Internet. I don't have any magic advice or cure! Just support and an ear to bend, someone who can understand how you feel!

Hugs

Jen xxx

[JoTatham in reply to honjen43]

Thanks Jen

He has been given fortified drinks, and we have the house stocked up with "goodies", but he is just not interested, and says the drinks are disgusting!.....It's like the saying goes "You can take a horse to water but you can't make him drink".....It is all such a shock to us both, I am hoping that in time (please God time is on our side), he will make himself start eating...We have outpatients appt next Tuesday, where he'll be weighed, so I guess we'll see what the consultant says if he has lost even more weight... Thank you for your reply xx

[honjen43 in reply to JoTatham]

Try them! I thought they tasted aweful too! Let him see you do it!

Is there something he is particularly partial to?

Give him your hugs and sympathy. He is feeling crap! Know it is hard for you too.

Hope the doctor's visit is productive. Wonder if an antidepressant would be of any help. Clutch any straw!

You will learn to be his advocate and to ask questions on his behalf, research both your concerns, and fight both your battles. And yes, it gets tough, and exhausting! But you can let off steam here and we will understand!

Hugs

Jen xxx

[JoTatham in reply to honjen43]

Thank you xx

[Keidor]

Sounds like a very sad situation I’m sorry to hear about it. I personally don’t know anything about the Treatment that you referenced. My situation was different and that I was able to have surgery and have a Whipple procedure which increases my odds but still not out of the woods it takes five years. I will pray for you and your friend and hope for the best

[JoTatham in reply to Keidor]

Thank you xx

[LexingtonLuLaBelle]

Hi,

I’m going through this with my mother right now so I thought I’d tell you my experience. My mother who’s also 62, was diagnosed with inoperable pancreatic at the beginning of August. They won’t tell us what stage she’s at because apparently with pancreatic it doesn’t make much difference. We were t given any time scales as such, all we were told is that 50% of patients on Folfirinox survive 1 year and of the remainder 10% survive. We took that to mean the same as what you were told. She’s never smoked or done drugs and has never really been a drinker either. She hadn’t been particularly well for about a year before and had put weight on for a while. The doctors tried to figure out what was wrong with her and nothing showed up until she had a CT scan in July, which then showed it.

When the Hospital tried to take a biopsy they weren’t able to because it is touching more than one artery and so we had to wait an extra 2 weeks for a biopsy to be done at a specialist hospital. Thankfully they were able to do it with ultrasound guiding.

A week before Mom was meant to start chemo i went upstairs to give her a hot water bottle and she was curled up in a ball unable to breathe properly or talk. I called an ambulance and she ended up in hospital for 5 days with blood clots and fluid on her lungs. Thankfully she started to improve and was able to have her picc line in and started chemo the next week.

Moms also on Folfirinox and was meant to start her 5th round today but hasn’t been able to because her bloods aren’t right. The only good part about her bloods not being right is that it’s the chemo that has done it.

Since being diagnosed my mom has gone from 11 1/2 stone to 8 stone 13. She only leaves the house for her appointments and spends the rest of her time in bed or on the sofa asleep or knitting. She won’t talk about the situation and we’re not allowed to talk about it in front of her either. I’m 29 and I’m registered disabled due to mobility problems (and everything else) and my father works away during the week. Everything has fallen to me to deal with.

I sort moms daily drugs into a 4 times daily, week pill box. I have to remind her to take her drugs and give her her morphine otherwise she doesn’t bother. I have to inject her twice daily with Clexane blood thinners to reduce the risk of further blood clots.

With regards to food I agree with what ken said about calories in. My mom can’t keep any food in her body, it all comes out as a discoloured water diarrhoea. She was started on Creon 40000 which made no difference to her and when we changed her onto Nutrizym last week it seems to have helped her hang onto her food a bit longer. We give her everything and anything to eat. I try to keep her fat content to a minimum as it seems to aggravate her stomach more than other foods. We did try her on dried fruit for a while and then the doctor said because of its high fibre content it would just make things worse. She has explained that it feels as though her throat closes which is why she doesn’t like to eat so no chunk soups have been good. If she fancies anything I go and buy it so she can have it. Keeping food next to the bed has helped as she’s been eating garribaldys over night when she wakes up. She’s been drinking things like lucozade sport and orange juice as they are higher calorie too.

I say all this about “she eats” but I mean only a few mouthfuls each time. It has caused arguments with her because if we don’t just give her food she wouldn’t bother. The drinks the Hospital gave us went through her worse than good so she stopped having those too. Little and often high calorie foods is the best approach. Just get as much in as you can.

Moms had numerous side effects with the chemo, all of them have been ‘normal’ and we’ve learnt the cycle and know roughly what to expect each day.

I am also acting as moms community nurse now. I am able to do her picc line flushes, re dress her picc line and do her chemo bottle removal. I’m not medically trained but the nurses said I could do it if I wanted to and showed me what to do. It has made life a bit easier but not many people feel comfortable doing it.

I’m really sorry if ive babbled a bit, there’s so much I can tell you that I’ve learnt that it’s hatd to type in a message.

This is a horrible disease and it’s caused so much hurt and pain. My father and I have both had to put our emotions to one side and we stay totally practical as any form of emotion that we show distresses my mother. I have no idea how this is going to go but keep your chin up, take one day at a time and spend every moment you can with him. And just keep giving him different foods to eat, even sweets.

If there’s anything I can do advise wise or anything then please let me know. Support is vital with dealing with this.

Stay strong.

Flic xx

[JoTatham in reply to LexingtonLuLaBelle]

Thank you so much for your reply......It is such an awful time for us all.....I think you are amazing doing the nursing side of it yourself.....Chin up, we are all in this together, and it is good to read others supportive messages xx

[pc2017 in reply to LexingtonLuLaBelle]

Get in on any trial that is available.asap.it's your best chance of survival.

[Lovelysolorio]

Hi i am not a cancer patient but i do have chronic pain. I would recommend cannabis oil. If he can take it its not good tasting but if he will be trying to live i suggest it. It will improve his hunger relieve nausea and relieve some pain not nothing like chemo but it nice to have something that will boost up your hunger especially with pancreatic cancer.. Best wishes to you. I hope your husband will find the will to live especially if you have kids.

[JoTatham in reply to Lovelysolorio]

Thank you

[jessm66]

Hi,

My mum was 64 and sadly lost her life in October this year. Just 21 days after diagnosis to this cruel disease.

She became very unwell extremley quickly which resulted in her not being offered any treatment.

She was not able to eat at all and was given the supplement drinks, which she would try and often refuse, if lucky we would manage to get her to sip at a bottle throughout the day, I dont think she managed no more than that. Somedays completely refusing it.

The past two months since losing her has been awful. The shock of how quickly PC can take someones life is cruel.

My sister and I did everything we could to make her last few days more comfortable and I can take some comfort in that now.

Sending you all comfort and love on this awful journey you are on to you and your loved ones.

I hope one day they find a way to diagnose this disease earlier to give someone a fighting chance.

Jess xxxx

[Jow27 in reply to jessm66]

Hi Jess, just read your post about your beloved mum. Please can I ask why your mum’s symptoms were when she was diagnosed and do you know why she died so quickly after diagnosis. Many thanks Jo

[chocolate3]

I’m so very sorry to hear yr story as my dearest husband went down the exact same path. We found Cannabis oil helped him cope with life in a more positive way and helped him enjoy what life he had left. He enjoyed most of the 11 months he had more or less pain free but sadly lost his battle Nov 16. My heart goes out to you both and wish you the strength to carry on enjoying the time you have together. Stay positive and don’t waste precious time being sad

[nee66]

Don’t believe the life expectancy i know people who were told the same and 10 years on they are still living life make sure he takes supplements also god bless

[Lottieonline in reply to nee66]

WOW 10 years & on! Amazing.Please please share how come?

I’ve just noticed it was 4 years ago you posted your comments so I’m just hoping you notice my request.

It’s not the first time I’ve noticed people have mentioned their friend or family member had past the 10 year mark. Amazing!

[micelle]

Considering what I've read about the Whipple surgery, "inoperable" may be a blessing.

Can you say more about "sore back"? How can one tell that's cancer-related - as opposed to poor car seat design.

I don't always practice what I preach, but IMHO staying fit is huge. Our lymphatic system, the path of our immune system, having no heart, has to rely on our moving around to function. A comparison study of mice, with or without an exercise wheel (NYT) was compelling. Doctors will focus instead on the way in which exercise helps endure chemo.

I'm so sorry about your partner.