My 41 years old husband has inoperable pancreatic cancer

[Chrisf]

Susanna I'm so sorry to read about all that you are going through - it is terribly hard. I would like to echo what others have said about taking all the support that is offered to you and also make use of the nurses here (I can see that you already have) - they were hugely supportive to me when I needed it.

Christine

xxx

[SusannaUK]

Thank you Christine! That is true, there are so helpful and supportive people in this forum and all of you know how we feel, what we are going through.

I am now very worried about my husband because he's got very bad abdominal pain, he hasn't had for 2 months. He had a rest week now, tomorrow he's going to have the 9. cycle of Folfirinox (hopefully). He can hardly move now, he's really suffering of pain. I don't know what to do. He is taking very strong painkillers on daily basis. 4 times 2 Paracetamol tablets/day, 130 mg Oxycodone long release tablets every 12 hours, plus oral Oxycodone 4 ml whenever he needs it. This was all set up 2 months ago in the hospice and has worked very well so far, as he hardly felt any pain. But yesterday and today he feels awful. I am so worried. Why is that? I don't understand. Hopefully tomorrow he can talk to his oncologist and understand what happens. And hopefully his blood test result will be good enough to carry on with chemotherapy.

I will let you know tomorrow.

Susanna x

[SusannaUK]

Ahhh, I am so nervous. My husband was awake almost all night, he had so much pain. I really don't understand this. As I wrote on my previous comment, he takes so much painkiller...

The transport took him an hour ago to hospital. He will have blood test and they will see if he can have the chemo today (the one was postponed last week because of low blood platelets).

I hope it all goes well for him and his pain will be sorted out. It's heartbreaking to see him like this.

Take care all of you,

Susanna x

[rsk1974]

Hope all goes well today and the oncologist can sort the pain out, such an awful awful disease. Big hugs

[Sueoliver]

Hi Susanna hope things went well today and the oncologist sorted the pain out. Take care and stay strong. Sue x

[LMD]

Hello Susanna - hope your husband feels better and the pain is under control. Thinking of you x

[jay]

hI sUSANNA, HOPE THE PAIN IS UNDER CONTROL, A FEW WEEKS AGO MY HUSBAND WAS IN ALOT OF PAIN AS THEY SAID HIS BODY WASNT ABSORBING ORAL MEDS, HE WAS SWITCHED TO IV MORPHINE, WHICH WORKED, HES NOW BACK ON ORAL MKEDS,

X

[SusannaUK]

Dear All,

Thank you for all of you for your comments and for thinking of us!

Yesterday my husband blood platelets were 160, so it was ok to carry on with the chemo. He had a reduced dose of Folfirinox and the oncologist decided to have it in every three weeks instead of two weeks (reduced dose). It looks like that it was too much for him. So yesterday he had the 9th cycle. 3 more and 12 cycle completed. After that they would like him to participate in a clinical trial. It called PARP Inhibitor Trial (related to BRCA). I have no clue what it is. It is something about genetic things. I've searched on the internet yesterday but found so many things, I don't know what it will be exactly... My husband is happy to do the trial, he trusts the doctors, so they will start it after he completed the 12 cycles.

I also asked him to ask the oncologist about his CA19-9 level, as I read so many of you mentioning this and we had had no information about it until yesterday, when he asked. I was shocked when I saw the numbers were so high! Here it is:

May 2014 was 187,749

June 2014 was 74,771

Aug 2014 was 28,105

Sept 2014 was 26,340

My husband is ok today, they didn't do much about his pain, because by the afternoon it was eased, they said that it happens sometimes... It was just unusual because he hasn't had this terrible pain since May!

Anyway, overall, we are fine and his happy that he will just have it every 3 weeks. I am of course a bit worried (as usual). Isn't it a back fall?

Now he is back from his massage, the boys are in the nursery until 6 pm, so we have a little time together today.

Thank you again all of you!

Susanna x

[nikkis]

Hi Susanna,

The trial sounds interesting, that is good news that he has another option. It is understandable you are worried,this thing takes away all our certainty in life. Hope that pain stays away.

Nikki

[Didge]

It is thought that the BRCA gene, which accounts for some breast cancers, can also be linked to some pancreatic cancers. My bf is waiting to be tested to see if he has the faulty gene. I have heard of at least on PC sufferer who responded well to Herceptin after finding out she had the faulty gene so it is worth a go on the trial if he can. CA19-9 levels are a very individual thing so cannot be compared to other people's. Some PC tumours do not give raised levels at all. the important thing is that they have come down a lot!

[nikkis]

That's is really interesting Didge, I knew there was a link between PC and breast cancer, but I didn't know they could test men with PC for the faulty gene. Paul's mum and 3 of her sisters have all had breast cancer, and his consultant has only ever talked of testing our girls, something I do not feel comfortable about. Will definitely ask him about this.

Nikki

[SusannaUK]

Thank you Nikki and Didge!

Didge, thank you for the explanation. Now I understand a bit better what it will be. It sounds interesting indeed. Also I didn't know that CA19-9 level are very individual. So many things I learn here on this forum. It is true, his level has come down a lot, which is good and that is what I have to see in it.

Nikki, my husband is not a big pain now. I don't know why he had it for 2 days. I assume it just happens. But he is very very tired, just sleeping all day. I am so sad! The boys are always asking me where Papa is. They are sad too that he is not with us. It's so hard.

If there were so many people in Paul's close family with breast cancer than definitely ask about this from the oncologist. He might be another ideal person for this trial.

Take care all,

Susanna x

[SusannaUK]

Dear All,

Ahhh, we are having a difficult time again. Since yesterday evening my husband has had a lot of pain and taken a lot of oral Oxycodone, we started to run out of it. Of course (as usual) we come to this point during weekend when there is no GP Surgery open. When he woke up this morning, he could not stand up, was in so much pain. I quickly called the Palliative Care Team in the local Hospice and luckily his Community Nurse was in duty this weekend, so she could come and visit us immediately. She arranged a doctor to prescribe some Oxycodone. She took me with her car to the nearest hospital to collect the prescription and also took me to a pharmacy which is open on Sunday and luckily they had Oxycodone in stock. It was such a big help for us, I couldn't say thank you enough to her. Now my husband takes it often and we have to see what happens. We don't understand why this pain is there again, he hasn't had for almost 3 months. I am so sad, my husband is just sleeping all day, actually slept through the whole weekend. I was struggling with the boys, they sense that something is wrong and just more active than ever and just don't listen to me. Jumping all around, had some accidents, of course because of jumping and going crazy. I tried to cook and tidy and clean, but struggled. Just to see my husband like this is so heartbreaking. He cries a lot because he see how I am struggling, although I try to hide it from him, but he cries and say sorry to me because he cannot help me with the boys and he cannot spend time with us. I always tell him, don't be silly, don't say sorry. If you need to sleep, if you need rest, you have to sleep and rest. He is the priority now. It is just so hard. I really hope that this pain will be sorted because it is just so heartbreaking. He doesn't eat, he eats very little and just loosing weight. He lost 2-3 kg in the last couple of days. I am so so sad! What shall I do? What can I do for him?

I know that all of you are going through the same or similar, it was just good to write it out, I cannot sleep, I am just thinking and thinking and thinking.

Take care all of you,

Susanna x

[nikkis]

Dear Susanna,

You are having such a tough time. One of the things Paul and I say we are really grateful for is that our girls are nearly grown up and able to look after themselves, it must be so hard coping with young children. I just wish I lived near you so I could send my girls round to babysit and give you a break!

Paul's pain is always there, but gets worse at times but so far, it has not meant anything has changed. The chemo itself seems to give him pain, I tell myself it is because it is giving the cancer a kicking! Since January the only thing that has really worked is Diamorphine, either through a pump or I give him injections through a small port. I am sure the palliative care team will find what works for you husband. New drugs might make him more sleepy at first but once he gets used to it he should feel better. Your Community Nurse sounds wonderful, I wish everyone here had someone like that who was willing to go the extra mile.

I really hope things get better for you soon,

Nikki

[nikkis]

Just had a thought Susanna. Has anyone suggested Homestart? They have volunteers (often Mum's themselves) who give practical and emotional support to families with young children. In our area this means you have the same person, usually for half a day a week, who is someone you feel comfortable with, who will look after the children while you get on with things or just be there to support you. You can self refer and their website has lots of info, and will tell you what is available locally,

Nikki

[Didge]

Susanna, I will message you privately but I am so sorry you are having such a hard time. I think Nikki's idea of Homestart is a great one. There is a lot of help out there but it is not always easy to remember or to have the energy to look for it! x

[RLF]

Hi Susanna, I've been reading your posts for a while but I felt I needed to say well done for doing so much and coping with it

as well as you are. You may not think you are coping well but my god I find it hard just looking after 2 of us and the dog, I really don't know how you can do it with young kids too. So much respect for you! I don't know much about what you can do for him at this point, but keep your medication stocked up, if you're getting half way through a bottle get another so it's there if you run out and everywhere is closed.

That home start idea is a great one, so that's something to look into. Hope he feels more comfortable soon. Rob x

[Bowie]

Susanne, I'm really sorry you are going through all of this and like others can't begin to understand how you cope. You really must be so strong to cope practically, emotionally and just to get though each day and it must be so hard with your young boys. I hope you get some help sorted out soon. Fiona X

[sandraW]

Susanne, I too feel sorry that you are having to cope with all this without any family help, as they are so far away from you, they too must be worried about you and your poor husband.

Its awful for you to see him in pain, and I feel so sad for him too not feeling well enough to spend time with your two boys. I hope you can access some help soon, you are doing a marvelous job, please take care sandrax

[jay]

Susanne sending you a massive hug,hope your husbands pain gets sorted soon,

x

[SusannaUK]

Thank you all for your nice words and supportive comments towards me. It means and helps a lot! I just don't feel alone.

Nikki, I will ask the Community Nurse about Diamorphine. It might be better for him too, we will see. Thank you for thinking of me about childcare. I have already been in contact with Home Start and they were really nice, the only problem was that there is nobody who would do weekends. Because they mostly work at office hours. On weekdays we are ok, because the boys are at home only in the morning, then I take them at lunchtime to nursery. Weekends are very hard.

We are getting a lot of support (especially for my husband) from a nearby charity organization for cancer patients and their families. My husband goes there for activities, and counselling, me too for counselling. End of last week they called me and told me that they were thinking how they could help us and offered to pay 6 hours per week for someone to take the boys out at the weekend. We can use this 6 hours as we want, but we have to find the person who we would like to look after the boys. I was thinking of the nurses from their nursery, I will ask them tomorrow. I hope we can do this. Fingers crossed.

Today we had a very hard day, emotionally. He was crying all day, and me too, crying a lot all day. These are the days when he is usually down 3-8 days after chemo. He said to me that I was fantastic and he is sorry that he cannot help me in anything and he told me that I was the rock of his life. We had 1 hour in the afternoon at home and he asked me to sit on his lap and we were just hugging and crying. When I looked at him I just saw how thin and fragile he is, it's heartbreaking. I just cannot imagine him going. We have to be very strong and positive, we agreed in this and also he promised me that he will try to eat or at least drink the energy drinks, because in the last few days he hasn't eaten and lost weight.

After that I had to go to pick the boys from nursery. When we returned he was crying and said to me that he called his Mum in Venezuela and his Mum told him that she loves me so much and she has never met a strong person like me in her life and she thanks me that I am looking after his son so well. This brought tears into my eyes again. Today was just a day of crying but we needed this.

His pain has improved a little bit, but he is very sleepy, slept almost all day.

Sorry, it is too long what I've just written, but this completed my day, just to write it down helps me.

Thank you again for all of you! I am thinking of you all, a lot!

Susanna x

[belgrade]

Hi Susanna,

Having read your post I felt I had to respond just to say I'm thinking of you and your family. I understand how horrible this journey is for you, especially with your little ones who are too young to understand. All I can say is make the most of every day you have together.

Take care,

Hilary

[Cathy]

Hi Susanna,

I'm just quickly catching up after my holiday too and will also email you privately soon but just wanted to say how fantastically well you are coping. I know how tough it is seeing your husband so poorly although I'm pleased you are getting some good support.

I always found it helped to know I wasn't alone.

Take care

Cathy xx

[nikkis]

Dear Susanna,

I hope you find someone to look after the boys at the weekend, the charity sounds great. I think with pain relief the key is to find what works for you and not being frightened of trying different things. I am sure if you husband gets relief from the pain he will feel better mentally as well, but sometimes we just have days when we feel very low, but the next day is never as bad, so I hope it is the same for you.

Love,

Nikki

[jimharding100]

Hi Susanna

My wife normally comments on this forum on our collective behalf but I have a bit of information about the PARP inhibitor your husband has been asked to go on the trial for which I hope is useful!

I am a fairly and have had 16 cycles of Folfirinox now.

I had been referred to a geneticist who I met last week. There is quite a lot of history of various cancers in my family so they are testing for a faulty BRCA gene. Apparently, there are some very encouraging results from drug trials for these things called PARP inhibitors, in cases where the disease has been caused by this particular faulty gene.

It is very interesting. I'm sure it will be many years before they understand fully why some of us contract such horrible things so early in life but hopefully they will one day.

I wish your husband all the best with his treatment, and I hope he is well enough to enjoy the weekend.

Jim