Husband diagnosed with stage 4 pancreatic cancer

Hi English Rose, my husband was also diagnosed just before Christmas with stage 4 that had spread to his liver, lung and adrenal gland. Like you it was totally out of the blue. He had a slight pain in his back and we and the GP expected a kidney stone. We met the oncologist team on 20th December and He struggled with the pain as they tried different pain management (started with Co codamol and liquid Morph for break through pain but he didn’t want morphine at first. Once we got our heads round Morphine being good in the right circumstances things got better. He is now on slow release morphine tablets day and night and fairly pain free. He also started on creon tablets very early to help with the digestion which I believe also helps keep the pain away so do make sure you ask for Creon and perhaps have a discussion with one of the dieticians to understand more about them. Hubby started chemo earlier this month as he’s determined to outlive the timescale suggested in the prognosis. I totally get how this has blown your world apart. I take each day at a time try and savour every moment I have left with him and when he’s feeling well enough we try and make more memories. I feel so sad that our wonderful journey in life is ending so much sooner than we had hoped but for now I keep trying to enjoy today…..because I really can’t bear the thought of a future without him. 

Hello Wifey55, thanks for the response.  My husband is on Creon which helps him quite a bit.  Pain management is in early days but the support team at the hospital are fantastic and move fast to tweak dosages etc.  I hope you have family around to support you both?  Luckily, I am surrounded by a large family and have great friends too.  I have learned over the years to ask for help when I need it and don’t struggle on my own.  Wishing you and your husband every good wish, vibe and thought.

Hi English Rose, didn’t want to past by without saying that’s exactly how I feel at the moment. Not sleeping very well and have even had a few nights where I have grabbed his tummy( poor hubby). It just seems to unfair. I have had 25 years of marriages( I’m 43) so my hubby was my first real boyfriend at getting married at 18 felt so right. And here we are looking down the end of a barrel!!!! My husbands cancer has spread to his portal vein and SMA making it vary likely to be inoperable. First 6 rounds of chemo has kept it at bay but hasn't shrunk it. I do think the chemo has helped because he was in a lot of pain in his back and tummy but now 3 months on he can lye on his tummy but that might just be the morphine. 
Do you have a good support system around you? 

sending hugs

Chrissie 

Hello, thanks for the message.  I am very lucky to have two daughters and a wonderful sister plus 3 sister in laws, 3 brothers, and my elderly father plus a HUGE circle of friends, some of whom have gone through similar experiences in the past.    I hope you and your husband can continue to cuddle up together for some time to come.

Hi EnglishRose and Wifey55.New post for me too - I stopped here first as your posts caught my attention. I'm so sorry to hear your husbands were also diagnosed just before Christmas with Stage 4. Mine was too, so I understand your anger and shock. It was also a bolt out of the blue for us - just a month earlier had been running 5k every weekend until he developed bad shoulder pain. The day we were taking him in for an MRI, his legs collapsed and that's when we found out that he had metastatic pancreatic cancer that had spread to the spine and liver. Ever since he has been bed bound. He had emergency spinal surgery just before Christmas and was a month in hospital before coming home and is now in a hospital bed in the lounge. It's so hard as we have two teenage boys (the youngest with Downs Syndrome) who are literally watching their father wither in front of their eyes. He developed an awful bedsore while he was in hospital and has not been offered chemo or anything but palliative care, so it's hard to know where to go from here, apart from trying to enjoy each other's company while we can. We too feel robbed of the rest of our time together (he's only 58). I would be interested in hearing how the Chemo (and what kind) is going for your husband Wifey55.  

Hi Clee, first sending big hugs to you. There are no words to describe this monster of a disease, and Pancreatic seems to be the big kahuna of them all with so little bloody hope. But I digress, to answer your practical question about chemo. We were told that there are 4 types of chemo available with different levels of success and side effects. The first two only have about 10% chance of any effect…..I didn’t even take in what they were. The two they concentrated on explaining as options were either option 1 gemcetabine and Abraxan which is administered once a week for 3 weeks with 1 week off. The step up from this with potentially more side effects was Folfirinox, (a combination of 3 drugs) this is given for about 3 hours in hospital and then you come home with with a pump attached to you that dispenses the remainder for 46 hours at home. We were told this regime is not for the faint hearted and only offered if they think you are physically strong enough to cope with it. They believed terry was when they first saw him on 20/12 but by 9/1 he was struggling with pain and a liver function deterioration so they have adjusted the prescription to offer 2/3 drugs for the time being. So far he has had minimal side effects and is feeling positive that it is helping. Long May that continue. Hope that gives you some info you are looking for. Feel free to ask any questions or reach out to me for anything. Much love Z xxx

Hello Clee, so sorry to hear about your husband.  My husband was a runner too and considered by the oncologist to be fit enough for Folfirinox, which Wifey55 mentions in her reply.  He has had one treatment so far and suffered all the usual side effects - nausea, exhaustion and is very “down” in his moods.  He is actually mulling over whether to stop the treatment altogether.  Everyone reacts differently to chemo.  I see your husband is on palliative care - is that with Macmillan nurses?  I hope they can make him comfortable.  Such a hard time for all - I hope you have lots of support.  Thinking of you x

Hello Wifey55, my husband is on Folfirinox too.  He has been quite ill on it and is seriously considering stopping all treatment.   The enhanced care team have tweaked his morphine and he is now on a sustained relief regime which seems to help with the pain and sleep.  I hope your husband continues to deal with the side effects and you get more time.  Thinking of you x

Thank you both for getting back to me so quickly. This is really helpful. I think the main issue for us is that one of the spinal tumours has essentially made him paralysed below the waist. He had emergency spinal surgery 3 days after diagnosis and was told he couldn't have any treatment until he recovered from that, so that was his focus for 6 weeks. Then while in the hospital he developed a pressure sore and was told he needed to recover from that, but it just keeps getting worse despite my best efforts. He's only seen his oncologist twice and at the last meeting she told me that gemcetabine would be the likely option, if any, as she wasn't sure he would qualify for Abraxan as they had to apply for funding for it, but that she would have to speak to him more directly at the next meeting. Because he is technically bedridden, he's classed as having a performance score of 4, which apparently makes him ineligible for any trials or most treatments, even though he seemed perfectly healthy and was running just 2 and a half months ago. He didn't initially want to talk to the oncologist as he knew he had to recover from surgery first and just wanted to focus on that. He was also concerned that she would just say it would make him feel awful and wouldn't be worth the time it bought him (which is what the palliative care nurses at the hospital essentially said to me) and he didn't want to be left without hope, but now he's more ready to discuss options, we can't get an appointment until March 22, which seems just too far away when time is of the essence. I just don't know what to do for the best. We had no idea that he had cancer until his legs collapsed as it didn't turn up on the shoulder x-ray, so the GP and physios initially thought his shoulder pain was muscular. What makes it feel worse is that my husband worried from the start that his shoulder pain was a sign of cancer as that was the same initial symptom his father had when he had terminal prostate cancer that wasn't diagnosed until it had spread, but everyone reassured my husband that his PSA levels, etc were fine and he didn't have prostate cancer. No one suspected pancreatic cancer. It really is a monster of a disease and I'm so sorry you are going through it too. His palliative care is through the local hospice now and thankfully his pain is managed well, for the most part, with slow release morphene and pregabaline, though sometimes the morphene makes him tired and disoriented, which frustrates him, but at least it is much less painful than it was pre diagnosis and surgery. I'm glad to hear the slow release morphene is working for your husband too English Rose and that your husband is feeling positive about his chemo Wifey55. Big hugs to you both. 

Hello Wifey55, your journey sounds just like ours is going to be, my hubby has just been diagnosed. Can only do chemo. Horrendous isn’t it! Like you I’m trying to enjoy the good days with him while we still can, it’s heartbreaking as to what they are going through physicall not to mention mentally x