My 41 years old husband has inoperable pancreatic cancer

[jimharding100]

Please excuse the typo in the previous post! I'm typing as I'm having treatment so probably a bit fuzzy! I was trying to say I'm a fairly similar age to your husband (37)

[SusannaUK]

Thank you all. It looks like that two of the nursery nurses are keen to look after the boys on Saturdays for 3-4 hours. It would be so good, fingers crossed.

Jim, thank you for the information about PARP inhibitor trial. It sounds very interesting and promising. There is also a history of cancer in my husband's family, now I understand why they said that he would be an ideal patient. Let's see what happens.

His pain is not that bad now, but he is sleeping a lot! Almost all day. There are sometimes a few hours when he feels strong and than wants to do everything, he does too much then again bang, falling asleep. I told him that he might need to use his energy a little wiser. Jim, you are also very young, but I am glad to hear that you are doing well and have less side effects and you can also work full time (I've read in another thread). You are doing amazingly well. I will pass the information about PARP inhibitor to my husband tomorrow.

Take care,

Susanna

[SusannaUK]

Hello everyone,

Unfortunately my husband is still fighting with big pain. It is now more than 2 weeks. He has some periods (few hours) when he is ok, then he feels like full of energy but than it goes down again and in big pain. We had a terrible 4 days from Friday to Monday, he was in such a big pain, I had to call the hospital and the hospice too. They've increased his morphine (Oxycodone/Oxynorm). Slow release from 130 mg to 200 mg every 12 hours and liquid Oxycodone from 4 ml to 7 ml, whenever he needs it. Unfortunately he need it a lot. He said the pain is as strong as before he was diagnosed or even worse. He wakes up at night because of the pain. It is just so hard to see him like this. Although he's got some good hours when things look "normal", we try to use these hours and spend the time together with the kids, four of us.

The nurses arranged an appointment for him for Thursday with the Palliative Care doctor and they also try to arrange a CT scan because they want to see what is going on inside. I am so so scared!!! The nurses said that unfortunately PC is so aggressive, that the tumours might have grown since last scan, even though after the 5th cycle the CT scan showed decreased sized tumours. Today is chemo day, it is the 10th cycle for him, I hope that everything will go well and they can go on with it. We wrote a long list of questions to ask the doctor. We will see.

Take care everyone,

Susanna x

[PCUK Nurse Jeni]

Hi Susanna,

Sorry to hear about your husbands pain issues.

Can I ask is he taking anything such as Pregabulin or gabapentin? Do email us on support@pancreaticcancer.org.uk

Kind regards,

Jeni.

[knutsford4]

Hi Susanna,

I'm so so sorry for what your going through, I cried reading your posts, my husband is 48 was diagnosed 2years ago, he is now terminal, they told him a few months in January, it's so hard cos he still looks so healthy, he has back pain this last 5 weeks oncolgious said it was muscular and cramps in his stomach now but only last week the CT showed no change, he's putting the cramps down to the co-codomal he was taking now reading your post I'm going to talk to him about taking to his consultant, he has another scan early November,

Sending big hugs your way, try and stay strong

Martine xxx

[sandraW]

Hi Susanna,

Sorry to hear your husband still has pain, I do hope the doctors can sort something out to make him feel more comfortable, that is what frightens me the most, that my husband will be in pain, and it seems so wrong in this day and age, that people should be suffering.

Lets hope they can get a scan asap and that it at least shows no change and at best further shrinkage. take care sandrax

[SusannaUK]

Thank you Jeni, Martine and Sandra!

Jeni, my husband is not taking any Pregabulin or Gabapentin. I will email you tomorrow to send a list of medication he is taking.

About today: he didn't have the chemo. The oncologist said that he is very concerned about this strong pain, so he wanted to cancel the chemo and booked my husband for a CT scan for next week Tuesday. I am just so scared that it will show something bad. I try to stay positive but it is hard...

I don't know when he will have the result of the CT scan, but I guess that pretty quick, as the oncologist said to him that he will see him next Wednesday. Also he found out what kind of treatment is this PARP inhibitor trial, they want him to take part. It would be just tablets, so I assume they would remove the PICC line. But it is so far away, now we are trying to concentrate on the pain issue. Tomorrow morning he is going to the hospital (not where he's getting chemo, another one closer to us, where his oncologist also practices two days per week). He will see a specialist, a Palliative Care doctor and they will review his medication and painkillers etc.

So, that's for today, now I am going to sleep, just too tired and it's very late.

Take care all,

Susanna x

[SusannaUK]

Hi All,

Yesterday my husband went to see the Palliative Care doctor and she kept all his pain killers and other medication as they are. The only thing she's done is prescribed an additional medication called Pregabalin (capsules). This is the medication what Jeni asked me a couple of days ago, if my husband is taking it or not. So now he is taking it.

Does anyone have experience with this medicine?

Take care all,

Susanna x

[SueH]

My husband was prescribed pregabalin. I think it takes a few days to get into the system and work fully. My poor husband was in a lot of pain at the time and this drug really helped him. It works on nerve pain in a way that standard pain killers don't. Some people on the site have had a procedure to block the nerve pain. I hope your husband starts to feel an improvement soon. Best wishes Sue

[SusannaUK]

Thank you Sue! Unfortunately my husband still have unbearable pain, we are very worried now. He started Pregabalin on Thursday evening.

He had a CT scan today in the morning and will go to hospital tomorrow to meet his oncologist. He will then tell my husband the result. We are just so so scared! This pain is worrying and scary. The community nurse from the hospice came to visit us on Monday and she said that the best would be if my husband would move again to the hospice for a few weeks. Then they would be able to monitor him and hopefully sort his pain out. Probably he will move in soon. He hasn't had chemo for 4 weeks now, tomorrow the doctor will decide if he can get his 10th Folfirinox or have to be postponed again. It is just so hard to see him suffering, and I am not able to help, which is the worst part. It's so sad! PC is so cruel! I am frightened now of tomorrow's news. I hope that his pain is not back because the tumours have grown.

Take care all of you.

Susanna x

[sandraW]

Just to let you know I am thinking of you and your husband of course. hope he gets good news tomorrow, and that he gets a bed soon so they can get his pain sorted. sending cyber ((hugs)) take care sandrax

[Sueoliver]

I hope everything goes well today. Stay strong. Sue x

[knutsford4]

Ack Susanna, I hope your news is ok today, sending cyber hugs to you all

[Cathy]

Hi Susanna

Have been thinking of you lots and am hoping and hoping that you have good news, or at least not bad news.

Cathy xxxx

[wackywacky]

Hope your news was good x

[SusannaUK]

Hello All,

Thank you for your nice words and that you are thinking of us.

The CT scan result itself is actually good. They compared it with the July's scan. The pancreatic (main) tumour has decreased in size again. Not too much, just a little bit. The other spots he has are the same size, some of them a bit smaller, but most of them stayed the same size. So that is a good news.

Oncologist now doesn't know why my husband has such a big pain. He thinks it might be something to do with a nerve in spine or something. He now referred my husband to MRI (spine). It will be on Monday. He prescribed steroids to my husband. Also he told him on Wednesday that he can have the 10th Folfirinox. But my husband said that he would like to wait 1 more week, because of this pain and because he has a bad cold. Unfortunately all of us have a bad cold at home, started with the boys, then me, then my husband. So next Wednesday.

What worries me is that the oncologist also said that most of the times the CT scan is behind reality. Which means that the scan shows the picture of that moment, but the pain can be a pre-sign of the tumour growing. This is just so scary!

Tuesday night was quite a nightmare. My husband fell in the bathroom at 4 am. I just suddenly woke up heard him shouting for help. He was brushing his teeth in the bathroom (don't ask me why at 4 am) when he just fell asleep standing. He hit his ribs very badly at the edge of the bath. Since then he has even bigger pain.

In the meantime hospice called that they have free bed, my husband can go in. Now he doesn't want! He said that he worried about me how I will cope, so let's wait a bit. I don't think that there is anything to wait for. I want him to go for 2 weeks to sort out the pain. It is just so hard to see him like this. Today the nurse came to visit us from the hospice and two of us tried to convince him to move into the hospice but still doesn't want... We agreed that next week he will give a day when he moves in. I hope finally he will understand that this is the best for everybody and it is really just a couple of weeks.

So that's the update on us. Good thing, not that good things.

Take care All,

Susanna x

[Slewis7313]

Good news on the scan results Susanna. It's interesting that they said the CT scan my be a bit behind what is happening in real time and perhaps indicates that PET scans do have a useful place in the Pancreatic Cancer world. But as said, the scans are positive and confirm that things are being managed and held at bay, even reduced at the original site.

It does sound to be the right time to focus on the pain and (based on what I have read on this forum), the Hospice's are the experts. A two week stop could make such a difference to both his quality of life and your concerns. Hopefully you can convince hubby to take them up on the offer which will hopefully put him in a stronger place to move forward with the fight!

Whatever is decided, The current results look good and I hope the pain issue is resolved as soon as possible!

Steve

X

[The Isle of Skye]

Hello Susanna

The other evening unable to sleep I got up through the night and went online to find some help, answers, advice that might help ease the pain. As I was searching I came across this caring and supportive forum and read your post. I was so deeply moved by your situation and cannot imagine the grief that you and your husband must have injured these past few months in trying to come to terms with his diagnosis. You have remarkable courage and strength, both of you. A precious time for you to be together and as a family that must be difficult when your husband is experiencing so much pain and discomfort. I have spent the past few days continuing to search for pain relief and have found a lot of information that I have downloaded you may too find useful, certainly seems to have brought relief to others. I can send you the information through email to look at if you would like to get in contact.

My email address is {email address removed - moderator. Please ask us if you wish to obtain it}

(I'm new to the forum but couldn't see anywhere that I am not supposed to include my email address in a post. I'm sorry administrators if this is not the case).

Best Wishes to you Both

Fiona x

[nikkis]

Hi Susanna,

So glad to hear the scan was ok, paul has periods where his pain gets worse but there is never a reason found, and then things get better, but pain is always an issue for him to some degree, and as of the last scan nothing has ever grown since he started chemo August 2013.

The hospice sounds a good idea, and I can understand him not wanting to leave you and the boys, but if they sort his pain out things will be much easier for you as a family. Our local hospice used to let Paul come and go, so he would have some nights there and some at home, I wonder if there is some sort of compromise he would feel happy with if he still doesn't want to go in,

Best wishes,

Nikki

[SusannaUK]

Thank you for your posts Steve, Fiona and Nikki.

Steve, I am sorry for my lack of knowledge. Is PET scan similar to MRI scan? I will search it on the internet when I will have a little time.

My husband had an MRI scan this morning, they looked at his spine because the oncologist would like to find the reason of this strong pain.

Fiona, thank you for your intention to share information about pain relief. I will send you an email tomorrow. Thank you for your nice words about us. I've been trying to do my best, it is really hard, but unfortunately most of you know exactly how hard it is. So sad.

Nikki, thanks for the hospice information. My husband also had a big freedom when he was in hospice for 2 months in Summer. I understand why he feels like not going in (yet). He is worried about me and the boys being alone but I told him I would be fine. I also told him that if he delays moving into hospice he will be in pain and will suffer longer. I am still trying to convince him... He would really like to travel abroad. He is determined and the oncologist said that we can go between two treatment. He would like to go to Hungary to visit my family and I would be just so happy if we could do this. But I told him that first his pain needs to be sorted out. I hope I can convince him at the end and we can travel. I think I will start a new thread about travelling because I would like to know other people, patients travel experiences.

Wednesday my husband is going again to the hospital and hopefully he can have the chemo because it is now too long since he had the last one. He is a bit worried because he has a bad cold, running nose. We will see what the doctor says...

Take care All,

Susanna x

[Guest]

Just want to say great news about the scan. A little bit is actually a lot when it comes to pancreatic cancer. No change is actually the best you can hope for and to have shrinkage is amazing. I hope your husband knows just how good his results are. He should be very proud of himself, he's doing well.

Leila xx

[Cathy]

Hi Susanna

Wonderful news about the CT scan. I know what a worry that was so I am so pleased for you

All I can say with regards to the hospice is that what Jonathan (my partner) had in mind when he went wasn't that he was going for him but for me (for respite)... Maybe that is a different way to broach the subject?

Wishing you all the very best

Cathy. Xxxx

[nikkis]

Susanna,

Hope you get that pain sorted soon so you can go to Hungary. We went to the Algarve in the summer with loads of drugs including morphine and everything was far easier than I expected. The hospice staff were really helpful at sorting things out for us, so I am sure yours will help you.

Hoping the chemo went ahead today,

Best wishes,

Nikki

[J_T]

I do like to hear good news so great to hear the scan results were good. As Leila says stability is good!!!

Also hoping you get your trip sorted.

Julia x

[SusannaUK]

Thank you Ladies!

My husband is still in big pain, last week he didn't have the chemo due to chest infection. He got antibiotics for a week. Tomorrow he's going again and hopefully he will get the 10th cycle, because he hasn't had chemo for 6 weeks. He is moving in to the hospice on Thursday this week. I really hope that they will be able to sort out his pain. He is very very weak, losing weight and most of the time just sleepimg. Heartbreaking for me and for the boys too.

I will update you later on this week.

Nikki, thank you for letting me know about travelling.

Take care all,

Susanna xxx