Husband just diagnosed at 36

[Annie14]

Hello,

It's been awhile since I updated but mostly because nothing has changed. Jim is still working and playing a lot of golf. We are also just back from a great holiday in Lanzarote. It's now been almost exactly a year since diagnosis and Jim has had 19 Folfirinox treatments. Today he received his latest scan results and its show that the tumour has grown slightly and there are new Liver spots to add to the previous ones. He had lost a bit of weight recently so we were probably expecting something like that to be the case.

So given the Folfirinox has runs its course he is now being moved onto Gemcitabine and Abraxane. If anyone

has any experiences we'd be grateful. It's going to be funny getting used to a new system. We are so

Used to our fortnightly trips to the Cancer centre. Hopefully this treatment works aswel as Folfirinox has done for us.

Hope you are all well and enjoying bonfire night. X

[nikkis]

Hi Fiona,

Glad to hear you had a lovely holiday and Jim has been doing so well, hopefully the changes are a minor set back, but I can imagine how stressed you have felt. Paul had 11 folfirinox and then changed to Gem/ abraxane as he was so unwell with it, but he had started this post surgery. He has been on the new regime since January and no changes on scans to date, and with the odd tweak (see my post) has managed quite well. His consultant agreed to fortnightly chemo as we couldn't face the weekly regime and this has worked well for us. The only thing that has been worse on the gem/abraxane is the neuropathy but he takes amitriptyline which has helped with this.

Hope that helps, and Jim is ok,

Best wishes,

Nikki

[Annie14]

Aw brilliant thanks Nikki. I'm pleased it's been doing doing the job for your husband. Jim has literally just got home and said he was going to read your thread as he had seen it on here previously. It's funny that we were so fixated on Folfirinox that we hadn't spent much time reading up about Abraxane so thank you very much from both of us for taking the time to post your experiences as it will be so useful for us when we've just been hit with it. Both feeling very positive though and glad we know early that the folfirinox has stopped working so he can start something else when he is still fit and strong.

Thanks again from both of us! X

[nikkis]

Glad to help Fiona and Jim, and it is always great to hear your positivity! Nikki

[sandraW]

Hi Fiona, good to hear that Jim has been feeling so well, pesky disease just won't let go will it. Just lets hope the Gem/Abraxane continues doing the same job for you both, take care sandrax

[Annie14]

Thank you both! We went for a lovely posh lunch today as a treat after the rubbish scan results. I forced Jim to have a starter and a main course pretending it was purely because he needs to put weight on when in reality I was just been greedy and wanting it myself

Have a nice weekend x

[sandraW]

What couldn't you manage a pudding! you should have forced it down, you need to keep your strength up after all, lol take care sandrax

[Annie14]

Haha - I don't have a sweet tooth so I'll filled up on wine instead!

Poor Jim had to drive back - I'm not making a very good carer am I

[SusannaUK]

Hi Fiona,

It is good to hear that Jim has been feeling well and he is able to continue his normal life. I hope that the Gem/Abraxane will do a good job and he can continue to feel well.

Take care,

Susanna x

[Ant11]

Hi Fiona

We have been following your story closely as James and Tracy were diagnosed more or less at the same time last year and have been on exactly the same treatment. I see James has now had 19, Tracy had number 22 last week. Can I ask a question please? Has James's CA19-9 levels changed or was it just the CT scan results that confirmed it was no longer having the desired effect? Wishing you all luck with the new regime.......

[Annie14]

Hello,

Tracy has done incredible to reach 22 sessions. Its a tough regime. Jim was tolerating it well so we were surprised it stopped working seemingly so quickly. A couple of weeks ago his weight started to drop off by a few pounds and he started to experience a bit more pain in his back. He was due to have a scan very soon after it came on so in some ways that was lucky. I made a decision when he was diagnosed not to become obsessed with cancer markers as I never wanted to be given false hope so I am afraid I don't know if they have increased in the past few weeks but he has chemotherapy on Monday so I will get the nurses to check his records and ill let know. I've checked his 'red book' but no mention of them in there unfortunately.

I hope the regime keeps doing the job for Tracy. All the best and ill get back to you.

Fiona.x

[Ant11]

Hi Fiona

Thanks for your reply. So pleased that the scan was imminent and with some symptoms reoccurring, I guess it rings alarm bells. It seems with this that oncologists seem to have different views regarding markers and CT scans. I'm not sure if you have seen Tracy's story which was recently put up and the video for the support line that we both took part in. We all hope that everything goes well for you and James on Monday with the new chemo. Plus look forward to hearing about the markers. We know what you are going through and keeping positive is so important but at the same time keeping your feet firmly on the ground with reality.

Take care and speak soon xx

[Annie14]

My very handsome and brave husband passed away yesterday. He had been kicking the ass of Pancreatic cancer since November 2013 although had been dealing with its effects since spring 2013. His decline was rapid in the past fortnight and Infact the last hours. (Although we knew it was nearing, I thought maybe a couple months) We left our house at 5pm Wedneaday to attend a routine appointment following poor scan results which showed ascities, spread to spine and organ failure issues but he still got in the car and walked up and shown the stairs at the hospital. They sent him straight to his private hospital near Harrow and 3am he had passed away. He was strong to the end. I'm so ridiculously proud of him and our daughter Caitlin, aged 5, has been a star.

Jim wrote a "book" from the day he was diagnosed. Mainly mundane stuff about how he felt each day and overall about his eventual passing. It may be useful for anyone about to start folfirinox or battle the disease overall. However, it is very long and talk about his childhood and our lives so equally it may not be of interest.

If anyone thinks it might assist them then please do feel free to send me your email address. I'm not sure if that's possible on the forum?

We are now busy making funeral plans - nobody warned me how mch there is to do but its a welcome distraction. I wish you all well. I won't stop reading the forum. We both did, daily. It's a cruel disease but atleast he is no longer in pain.

Fiona.xxx

[nikkis]

Dear Fiona,

I am so very,very sorry to hear that Jim has lost his brave fight. I have seen his picture and he was so handsome and came across as such a warm, lovely guy, it is so desperately unfair. As I imagine you have read Paul is near the end of his fight, the future seems pretty unbearable but we will stay strong for our wonderful girls.

If you ever want to be in contact away from the forum, email the moderators and ask them for my email address. You have been an amazing team through all of this. My favourite quote at the moment is strangely from Winnie the Pooh - " how lucky I am to have something that makes saying goodbye so hard", and I am sure this is how you feel too,

Lots of love,

Nikki

[MSH]

So very sorry to learn of Jim's passing. He was far too young, life can be so unfair.

My condolences.

Mark

[J_T]

So very sad to hear of Jim's untimely death, as you say he no longer has to deal with monster that is pancreatic cancer. I would be interested to read Jim's thoughts. My husband never felt up to doing anything like that and though people deal with things differently, for me, its helpful to learn how other sufferers deal/dealt with this.

Is this Jim who was in the recent film by pcuk? If so I can't quite take it in, he looked so well.

You sound incredibly strong and that strength with help you through and with your daughter who has lost her dearest daddy.

My heart goes out to you. Make sure you look after yourself too.

My deepest condolences

Julia xxx

[RLF]

I'm very sorry to read that Jim has passed away, my condolences to you all. I'm sure he's very proud of you both too.

Rob

x

[belgrade]

Hello Fiona,

I am so very sorry to hear about Jim and my heart goes out to you and your little girl. Life can be so cruel and he was taken far too early. I lost my husband to this cruel disease almost 18 months ago, some days it seems like yesterday and others like an eternity. Life does go on, not the one you planned or hoped for, but in time the sun will shine again .

My thoughts are with you,

Hilary

[PamW]

Dear Fiona

What an incredible man Jim was staying so strong for so long and you are right to be so proud of him. Hoping you will find the strength to deal with the days ahead. Thinking of you and your dear daughter.

Pam x

[Ant11]

Dear Fiona

So sorry to read about your loss of Jim. We followed your story closely as it was around the same time as my sister-in-laws diagnosis. If you wouldn't mind I would love to read Jim's story, when you feel ready could you ask the nurses for my email address. Thinking of you at this sad time, you are in my thoughts and prayers. He will be beside you every step of the journey. Far too young. love to your and Caitlin. Annette xx

[Jaynegood]

Hello Fiona,

We have not met my name is Lesley I was one of the people involved in the recent film for PCUK

I did not meet Jim but felt like I know him, you and your daughter from the emails and the film.

I know what you are going through, having been in the same place recently after the death of my beloved husband Seth

If you want or need anything from me please do let me know, PCUK have my contact details

I will be thinking about you and your little girl please take it slowly and be kind to yourself

Love

Lesley

[sandraW]

Hi Fiona, so sorry to hear that you have lost your beloved Jim to this rotten disease. He was far to young to loose his life, when he had so much to live for, he put up such a brave fight, and I know how proud you and Caitlin are and you should be very proud...sending sincere condolences to you both and the rest of the family, and remember Jim will always be with you take care sandrax xx

[Didge]

Dear Fiona, so sad to hear of Jim's death. My first husband was nearly 38 when he died and our eldest just 5, so your situation has special meaning for me. The days ahead will be hard but there is the knowledge that he will not be suffering any more. You and Caitlin will be in my thoughts. xx

[Annie14]

Thank you all for your kind wonderful words. As I read them, it struck me that you guys are the only people who truly understand what we have been through and what we will go through. My friends and family can say all the usually pleasantries but they are just that. They can't really "get it" but you all have a special place in my heart as strong people who have been put in a horrendous nightmare. Nikki, your Winnie the Pooh quote is magical and so true, thank you for bringing it to my attention. It is lovely. Throughout Jim's illness I have lived by the saying "You only know how strong you are until being strong is the only option you have". I'm sure we all never believed we'd cope being put in this situation but we do cope and we do get up every day. For me, I'm lucky that it is made easier by a five year old who jumps on my bed at 6am until I eventually trundle down the stairs. Julie - yes, that was Jim in the video and Lesley I think everyone who was involved was very brave. Well done. I haven't been able to watch it - even when he was alive. I saw a few seconds of him speak and saw a fear in his eyes I hadn't seen before. It was probably because he needed a pancreatic cancer style diarrhoea poo and was holding it in but I take comfort that the video exist and Caitlin can watch it one day. And I will too.

Thank you for offers of your email addresses. It will be nice to chat out with the forum and I will ask the admins for those and forward the "book" to those who asked.

[nikkis]

Fiona, reading your post brought more Pooh to mind (not normally a fan, but a nurse at the hospital was fond of quoting this, so I looked it up).

"If ever there is a tomorrow when we are not together, there is something you must always remember.... You are Braver than you believe, Stronger than you seem and Smarter than you think. But the most important thing is that even if we are apart, I will always be with you".