Husband just diagnosed at 36

[Annie14]

Thanks Marie! The hiccups are like clockwork and start after around 10am the day following chemo. It's funny, I think he prefers the diarrhoea to the hiccups!!! The Creon have helped maintain his weight but Jeni the nurse on here has suggested he keep a food diary and they will advise if he should take more. He is on 40k and takes one with snack. Two with a meal and three with a takeaway.

[nikkis]

Hi Annie,

Glad to hear that Jim is coping with the chemo. The hiccups can be a pain. Paul has been prescribed a small dose of baclofen which definitely seems to help so may be worth asking about.

Nikki

[Annie14]

Thanks Nikki - we will definatly ask about Baclofen.

[marie souter]

Hi Annie,

So pleased hubby n u r coping well x

Hugs

Marie

/x

[Charney22]

I am so glad that Jim is doing well, I have been wondering

how he was. Steve had his first oncology appointment yesterday and

they have consented to the folfirinox treatment, I know everyone is

different with side effects but it is nice to be in the know of what

can happen.

love and best wishes

Cheryl

[Annie14]

Thanks Cheryl, I hope the Folfirinox goes well for Steve too. I got a bit of a fright when they started the first cycle as within five minutes Jim completely changed colour and feel asleep but it happened so quickly it was as though he fainted. Thankfully though it turns out that it was due to the fact he had just had a sedation to insert the port into his chest and this didn't mix well with the chemo drugs. He was absolutely fine on the second cycle and sat up the whole time reading. His shoulder was very sore for a week after they inserted the port but it is fine now and the wound is very discreet. The port itself under the skin is only visable if you really look hard for it

Hope it goes well for you both.

[EmmaR]

Annie just saying hello and hoping whatever the future holds for you and your family you will be strong and I know you will have wonderful support here on this forum .

EmmaR x

[Annie14]

Aww thank you Emma! The forum has been fantastic as have the nurses! Very lucky to have found it and all of you. We are doing well most days but there are always days when it isn't so easy.

[Amanda J]

Hi Annie,

I am so sorry to hear about your husband, especially being so young. We are just starting out in our lives with our husband’s and young families and as you said we do not expect to deal with something like this. My husband David was diagnosed in June 2012 at the age of 34. You can read our story in the ‘Advanced Cancer Patients’ section titled ‘Successful Surgery in Heidelberg Germany – Inoperable in the UK’. In brief when David was diagnosed he was operable but due to severe inflammation from Pancreatitis following an ERCP the head of the pancreas became fused to the portal vein so the surgeon could not complete the Whipple procedure. Due to his age and the possibility the inflammation would subside the hospital attempted the surgery again in February 2013 but this time as well as the Pancreas still being attached to the portal vein the cancer had spread further into his Pancreas and Duodenum and we were told in March last year that he was now inoperable. They suggested Folfirinox which David had one session of before we were made aware of Professor xxx in Heidelberg who successfully removed David’s tumour after 11 hours of surgery. Please read out story. I am not saying that Professor xxx is a miracle surgeon but if he thinks he can operate he will. I am aware of another 2 people that have gone to Heidelberg and had successful surgery after being told inoperable in the UK and Steve who is on this site did go but unfortunately the surgery was not successful, however, if you read his posts he does not regret trying. I am not sure of the reasons as to why your husband tumour is inoperable, is it due to size, location???

With regards to your young daughter who is the same age as our youngest, we have a 3 and 5 year old (soon to be 6 and 4 in April and May this year) we have told them that Daddy has a poorly tummy and that the doctors at the hospital are trying to make it better. They came to visit David in hospital after his two UK surgeries and their Nanny and Grandad bought them both nurses outfits so that they could care for Daddy when he came home. They would always help the district nurse dress the wound on her daily visit. All I can say from my experience is that they are too young to really understand the reality of the situation, they have no concept as to what is all means and we continue with our normal life as much as possible although they do say that daddy sleeps a lot as he needs a lot of rest. One thing that has stuck in my mind but specifically from our 5 year old!!! I had a swollen gland in my neck, the girls were watching Peppa Pig and I was showing David and we were having a conversation about a lump and what it was. We decided it was a swollen gland and thought nothing else of it. When I was putting Jessica to bed that evening she got really upset and when I asked her what was wrong she said "you have a lump mommy does that mean you might go away too". It broke our hearts. We thought we had always been careful in what we said around them but she has clearly picked up on conversations. I guess they are like sponges at this age so just be careful what you say when you think they are not listening. As Sarah mentioned, I too spoke to their School and Nursery just so that they can make me aware of anything they might say there that might cause concern.

I am pleased your husband is coping with the Flolfirinox so far, as I said David only had one so never really felt the side effects that are described and as a lot of people have said already it can be different between each person.

Annie both David and I are wishing you all the very best for you and your family for the future.

Just one final thing, make sure you look after YOU too… that is equally as important to get through this which my sister constantly reminds me of.

Take Care, with love

Amanda. X

[Annie14]

Hi Amanda,

Thank you so much for your message. I am so pleased that your husband had a successful trip to Germany. It must have been such a long road for you all! We hope that one day we will be in a position to do the same. At the moment Jim's tumour is wrapped around vessels and also spread to his spleen and his liver. We are focusing on completing his current three month course of folfirinox and then his specialist is going to look into our options for nanoknife etc and we are going to send the scans to Germany for their opinion as to whether they would consider him. We will definatly leave no stone unturned.

Thank you so much for your advice about our daughter. She too doesn't understand but just knows daddy has sore tummy which makes him a bit tired sometime. We too need to be more careful with what we are saying around her as she is quite a clued up little girl.

Thank you for your best wishes. I hope your husband is well and your children too. We are keeping ourselves busy and looking forward to some lovely days out once the weather warms up.

P.s I've just realised my username is probably a bit confusing. My first name is actually Fiona but Anne is my middle name which I often use when I create usernames because Fiona is always taken.

xxx

[Annie14]

My husbands story is now on the website under the real life stories section.

http://www.pancreaticcancer.org.uk/information-and-support/real-life-stories/inoperable/jim

xxx

[MSH]

I developed pancreatic cancer at the relatively young age of 58, but have been around long enough to know that these things happen and the predominant emotion was probably more one of sadness. Reading Jim's story makes me feel angry, far far too young.

[J_T]

So young, but so determined . Good for Jim! Hope the treatment goes well.

Ray worked, laterly, for Everton FC though he was a Stretford lad and ardent Man Utd fan.

Best wishes

Julia x

[Annie14]

Funny you should say that Julia, Jim is also a huge Man United fan! I think he keeps that quiet at work though

[Annie14]

Thank you Mark! I can never quite pin down what emotion I feel but sadness is very close. Not a bad sadness. Just the odd feeling of why us. 99% of the time we are incredibly normal and positive though. Our daughter makes that so much easier. She keeps us busy and is currently so addicted to lego that we have little time to do anything other than pretend we are little plastic men talking to little plastic horses.

[Annie14]

Hi everyone! I just wanted to update you on Jim's treatment - he has now had 12 rounds of folfirinox and the latest scan again shows no change in the tumour. We are pleased there has been no growth! Best we could have hoped for. When he was diagnosed in November we were told they would do these 12 rounds and then reevaluate things. We certainly felt like getting 12 out the way was a big hurdle so when they finished and we got the scan results we didn't know what the consultant would suggest next. Surgery is out of the question due to those pesky blood vessels. We were a bit surprised that he suggested Jim keep going on folfirinox for aslong as he can tolerate it. So, basically, we are all set for number 13. Jim's determined to create a world record for undergoing the most folfirinox treatments of any pancreatic cancer patient. Hopefully they keep that tumour at bay much much longer!

[PCUK Nurse Jeni]

Hi Fiona,

Just to say this is wonderful news for sure! Well done Jim! He has really shown such determination, and thoroughly deserves this result. Yes, its very good news that there has been no growth! A note to everyone, stable disease, as it is referred to in the medical field, is a very positive result, and great that the chemotherapy is keeping things under control.

Yes, there have been others who have carried on chemo after their intended course. This can be seen in other forms of cancer too, and is becoming more and more common for patients to stay on chemo if they are able to tolerate it.

I hope that Jim continues to be able to tolerate the Folfirinox, and that he has even better results next time!

Kind regards,

Jeni.

[sandraW]

Hi Fiona, That's really great news,so glad Jim has got good results, we all want more but as Jeni explains no growth is fantastic, take care sandrax

[Birchen]

Hello Annie

So very sorry that you have had this dreadful news. My husband also complained first of all of acid and was given a anti acid tablet on prescription. This did not make any difference and he was diagnosed in June 2013 with pancreatic cancer and spread to the liver. His tumour was in the tail of the pancreas and all the way through his illness he looked exactly the same and luckily did not experience any of the eating problems, jaundice or blockages as lots of others on the forum have had. We were also very lucky to have BUPA health care and they have a special department that deals with oncology which I found to be brilliant. Terry had all his first line chemo at home and he found this extremely helpful as it did not interfere with his golf. It is worth asking whether they can provide this service in your area, I think it is called Healthcare at Home. I hope all goes well for you and that you also get the support you need. Take care Lyn x

[nikkis]

Hi there,

So glad to hear all is going to plan. My husband paul was on folfirinox last year, his consultant wanted him to carry on but only managed 13, but he started it not long after surgery so was always very poorly. He is now on gem abraxane for the foreseeable, tough but it seems the best option. He has some of his treatments at home, as Lynn suggested, so always worth asking about, as no-one seems to tell you it is an option. It is far less exhausting, and is quicker at they do the bloods the day before, so no hanging around.

Enjoy the holidays with your little girl.

Very best wishes,

Nikki

[Annie14]

Hi everyone, thank you for the your kind replies. It is a funny old disease when you are celebrating still being terminally ill but at diagnosis I never dreamt he would still be this healthy 9months on. Really interesting about the treatment at home - Jim quite enjoys his trips to the cancer centre in Bushey and the nurses always give him lots of attention so what man wouldn't like that but he may prefer treatment at home if the disease progresses. Do they take the bloods at home the day before or do you need to visit hospital?

[Annie14]

Nikki - 13 folfirinox treatments is an amazing achievement - I don't think I could have managed one myself! Xxxxx

[nikkis]

Hi Fiona,

The bloods are taken the day before, and the nurses tell me they sometimes even go to people's work to do them. We have recently found out that Paul can also have the bloods done the day before at home when he is having his chemo at the clinic, which will save a lot of time. It's something to bear in mind for the future, if Jim gets fed up with going in. I know what you mean about celebrating when it is still terminal. As I posted yesterday Paul has had another scan and there has been no changes, and we were very pleased, we started off hoping Paul would be cancer free, but you quickly lower your expectations don't you!The longer you can hold the bugger off the better, and it is so great that Jim feels so well.

Take care,

Nikki

[Birchen]

Hello to you all. Yes the Healthcare at Home team phoned every Monday evening and came and took bloods on Tuesday mornings (probably because Terry always played golf at 10 on Tuesdays) the chemo then following on Wednesdays. Terry was on Gemcitabine/Capecitabine and I can only say that all the nurses that came to us were friendly, helpful and professional and I really can't thank them enough for making this time easier for us all. I hope that you get all the help that you need. take care Lyn

[Cathy]

Hi Fiona

What a trooper!! It's a tough regime so maybe the Oncologist might suggest a little break and, from our experience, made a big difference.

It sounds like Jim is doing great. Fingers crossed that continues. As we say, keep on keeping on

Cathy xx