Husband diagnosed with Stage 4 pancreatic cancer just before Christmas

[Su M]

My 48 yr old husband was diagnosed with pancreatic and liver cancer mid December. A week later we met with oncology consultant who said he wanted to begin a treatment plan as soon as possible, he then had numerous biopsies/ CT scans around Xmas and New Year and started on FOLFIRINOX chemo last Weds 5th Jan, also had a pump fitted which was removed last Friday. It is all so new for us both that I have 100 questions and no-one to answer them. He seems to be ok from chemo but is still in terrible pain from the cancer. He is on fentanyl patches and morphine which initially appeared to help but now is not stopping the back pain and stomach aches. We have rang specialist nurse and she suggested upping fentanyl (from 25 microgram patch, and adding another 12.5 patch) but now awaiting the prescription to come through. Is this normal to keep upping the amount of fentanyl? We have read about nerve blockers - has anyone experienced a relative using these and do they work? After reading through some of the posts on this forum today, many of you speak about your CA 19-9 levels - What are these and should we know my husbands levels pre and during chemo? He has lost so much weight already but has no appetite. Dietician has already started him on enzymes and calorie shakes but he still eats such small portions, I can't believe he will ever put on more weight. Could his appetite and weight possibly improve in future? These are just some of the questions I have. Don't get me started on the emotional side we are going through.

[HMcG]

Hi Su M, I just wanted to say how sorry I am to read of your husband's diagnosis, as you say the emotional side of it is so overwhelming you can't even really put in to words. I am a newbie here as my Mum was only diagnosed 21st Dec, so I am probably not the best source of advise but just thought I'd share our experience so far. As I understand getting pain under control can be a bit of trial and error - as what helps one person will not work for another. Is there a reason they have given your husband patches rather that oral meds, such as swallowing issues? My Mum seems to have found a happy(ish) medium with long acting morphine tablets morning and night with short acting morphine or liquid morphine in between these times if she needs it. With regards to his appetite,  has anyone discussed steroids to increase his appetite? These seemed to really help my Mum increase her food intake, but of course I don't know if these can be taken along with chemo etc, but might be a question to ask the cancer nurse. Please keep on touch with how you're getting on and hope things get easier for you soon x

[Lornacath]

Hi Su M, I am so sorry to hear what a terrible time your husband and you are going through right now. Although I can offer you no helpful information or similar experience I just wanted you to know I’m thinking of you. X
 

[Gaffer]

Hi Sue M

So sorry to hear of your husband’s diagnosis. I have been in your shoes as my husband was diagnosed with stage 4 pc with liver mets in August 2019. Sadly he passed away in April last year aged 56. He too had folfirinox chemo and pump fitted which he tolerated well. The CA19-9 are tumour markers. My husbands were in the many thousands at diagnosis and did decrease but also increased at some points too. I would say not to get too hung up on them as a CT scan is a much better indication on what is happening with the cancer and I know some oncologists are reluctant to give the marker readings for that reason. I don’t know much about fentanyl as my husband had slow release morphine tablets twice a day and the dosage was increased over time and he also had liquid morphine for breakthrough pain. It may be worth asking about this option. With regards to eating it is good you have a dietician on board and good that he’s been prescribed creon. It takes some time to get the dosage right but you cannot take too many but not taking enough will have little effect. It is better to eat little and often and it’s a good idea to fortify foods for extra calories, use full fat milk, evaporated milk, cream in porridge etc, butter in mash potatoes and also add marvel powder in. If the shakes are too thick add in milk to these or a scoop of ice cream. Google fortifying foods for more info. I’m not sure if he’s taking something like lansoprazole (protein pump inhibitors), to help lower stomach acid, these may help as well. His weight will fluctuate, especially on chemo and you may find short term steroids may help too although from our experience these were not given without some persuasion from ourselves but when were given did help. Please give the nurses a call at pcuk, they have a wealth of knowledge and were a godsend to us- also have a look at some of their leaflets and view their webinars for information. Don’t be afraid to ask, nothing is a silly question. I know you are scared of this horrible situation you now in. I hope that you have some support too as you’ll have so many questions. I’m sure you’ll get some answers in this forum but everyone is different and I can’t say enough how supportive the nurses are at pcuk. I’m not a medic but I hope I’ve helped in some small way - it’s a lot to process and I wish you all the very best x

[Arthur0601]

I am so sorry to hear about your husband's diagnosis. ( I am pretty new here too)

I am caregiving for a dear friend here, he has no family ( we live overseas). He was diagnosed in August 2020, had a Whipple, long story short, in December 2021 we were told it has recurred locally and also he has mets in his liver. 

I concur with Gaffer about not getting too hung up on the CA19-9, my friend`s has been everywhere from 1000 ( at its lowest) to 440,000 in December. The oncologist told us that many factors can affect the number and although we do, we cannot stop ourselves ,  look for it on the sheet, it really is the CT that gives the real info. He is now taking an oral chemo 3 times a day, 4 days a week. 

I am sure you must be in a lot of shock and just trying to process things, it is so difficult. I really hope you will continue to post here, there are so many wise and knowing people willing to share with us all.

[Support Team]

Dear Sue M,

 

I am pleased you have found this wonderful supportive and friendly forum at your time of need. Such an overwhelming time I am sure and so many aspects to consider.

 

Sue please do consider reaching out to our confidential support line. Both myself and any of my colleagues are able to speak to you and help answer some of the many questions you have at present. I am sure you will find this helpful at such a stressful time.

 

Our support line is open from 9am - 4pm tomorrow if that might be an option for you on free call 0808 801 0707, or via this email address: nurse@pancreaticcancer.org.uk.  Please do not hesitate to reach out to us.

 

Dianne

 

[Su M]

On 1/11/2022 at 5:07 PM, Su M said:

My 48 yr old husband was diagnosed with pancreatic and liver cancer mid December. A week later we met with oncology consultant who said he wanted to begin a treatment plan as soon as possible, he then had numerous biopsies/ CT scans around Xmas and New Year and started on FOLFIRINOX chemo last Weds 5th Jan, also had a pump fitted which was removed last Friday. It is all so new for us both that I have 100 questions and no-one to answer them. He seems to be ok from chemo but is still in terrible pain from the cancer. He is on fentanyl patches and morphine which initially appeared to help but now is not stopping the back pain and stomach aches. We have rang specialist nurse and she suggested upping fentanyl (from 25 microgram patch, and adding another 12.5 patch) but now awaiting the prescription to come through. Is this normal to keep upping the amount of fentanyl? We have read about nerve blockers - has anyone experienced a relative using these and do they work? After reading through some of the posts on this forum today, many of you speak about your CA 19-9 levels - What are these and should we know my husbands levels pre and during chemo? He has lost so much weight already but has no appetite. Dietician has already started him on enzymes and calorie shakes but he still eats such small portions, I can't believe he will ever put on more weight. Could his appetite and weight possibly improve in future? These are just some of the questions I have. Don't get me started on the emotional side we are going through.

Thank you everyone for your honest replies. My husband has now had his 3rd chemo with folfirinox and has not been sick at all. He still suffers from stomach pains but some of this is related to his digestive system. His medication is continually being monitored by a 'symptoms management doctor' at the hospital who we meet every 2 to 3 weeks so that his painkillers and other medications can be adapted, this is a brilliant thing and really has made a difference to his life. His appetite is still poor during the week after chemo but improves the next week. I keep telling him to take more creon to help him put on weight, re advice given. We have also adapted his diet so his foods are fortified and more calorific. Unfortunately he now has a blood clot in leg which he is taking further medication for, which I think is probably related to his lack of exercise, but I know how hard it is for him to do consistent exercise. We are building up doing things out and about; and have managed a cinema trip and a light lunch out but he does still worry about being out for a 'meal', with all the smells and long amounts of time in what can be an uncomfortable seat. His tastes have really changed and finds things like eggs and beef 'taste funny' so he eats lots of creamy foods like carbonara, mac n cheese etc which appear to taste like he thinks they should do. Anyway, in general I am really proud of how he is coping with all of the chemo and hospital appointments. His bloods are currently in normal range and we will have a review with the oncology doctor after 6 chemos. The Big C have organised counselling for us too which I think is important. Thank you again for your responses. I will update every now and then as to how it is going.