Totally in awe of my wonderful Husband!

[Proud Wife]

Hello all

I am new to the place where no-one wants to be but I am very much looking forward to chatting to you all and hopefully benefiting from your experiences.

In the meantime, I just wanted to share my husband's Pancreatic Cancer story with you which started back in March 2015, to give a little hope to those who may just have been diagnosed.

I myself have my own healthcare problems; I was "the ill one" and my husband was ferrying me backwards and forwards to various different hospital appointments whilst trying to get a diagnosis. I'd noticed that my husband was taking more and more painkillers,( this is someone who was very anti taking medication) complaining of a back ache but I didn't really think too much of it at the time.

However, by the middle of March, my husband started to become unable to lie flat in bed, was losing weight rapidly and experiencing terrible pain. I insisted that he went to the doctors, thinking it was kidney stones that he'd always suffered from. Having BUPA cover, he was quickly referred to a Urologist who arranged for a CT scan. This is where it all started to go wrong.

To cut a long story short, we subsequently learned the Radiologist reported his CT scan that there was a large kidney stone stuck in the left ureter, several stones in both left and right kidneys, and there "was nothing unremarkable in the abdomen" (how wrong that turned out to be). Diagnosis was therefore kidney stones. My husband had always been able to pass large stones naturally (ouch I can hear you all say!) but because he was in such awful pain, he reluctantly agreed to be operated on.

During surgery, the surgeon failed to put in a temporary stent to prevent further stones dropping so of course, a few days after surgery with my husband still in the same awful pain and unable to lie flat, we went back for a second (non contrast) CT scan. This time but unknown to us, a different radiologist flagged multiple ill defined lesions in my husband's liver and a bulky pancreas (which the first radiologist failed to note, even though he'd commented that there was calcification in the left lobe of his liver) as well as more stones in the left ureter. The 2nd radiologist strongly recommended an urgent contrast CT scan to further assess his findings but my husband's Urologist failed to read the CT report and simply operated for a 2nd time, a week later.

The Urologist felt it would be in my husband's best interests (or in the surgeon's pocket) to start fragmenting the zillions of stones that were in my husband's left kidney (which don't cause a problem until they actually drop down into the ureter and get stuck) at the same time, resulting in a heavy 2 hour operation. When my husband came back from the operating theatre, this time I found him to be totally groggy, unresponsive and grey looking. I asked the nurses if he'd had different anaesthetic or whatever that would explain his condition but I was told all was okay. This time by the way, the Urologist inserted a stent in his ureter to stop any further stones being able to drop down.

However, after the 2nd operation, my husband still in the same excruciating pain, goes back a few days later for a 3rd time, has a 3rd CT reported back by a 3rd Radiologist who again flags the lesions in the liver and the bulky pancreas. True to form, however, the Urologist fails to read the 3rd report, looks only at the scan pictures and says that as no further stones had dropped, my husband must have pulled a muscle on the operating theatre table and suggested physiotherapy!

I looked at him and said how can you possibly say that, my husband is still in the same terrible pain as he was before the first operation, he cannot lie flat in his bed and is fading fast, so if it's not longer kidney stones any longer, it must be something else to which the surgeon replied "no, can't be".

So, the next morning, I called his secretary and asked her to fax me the CT scan reports, thinking that I'd get a 2nd opinion for my husband. The reports were faxed through immediately (proving they were available to be read) and of course, I noticed reference to lesions and bulky pancreas. A few google searches later and I realised that my husband probably had pancreatic cancer.

Our world was shattered when on 18th April 2015, my husband was diagnosed with stage 4 pancreatic cancer with liver mets. If we'd listened to his urologist and he'd had physiotherapy, my husband would have been dead by now.

However.....thanks to a wonderful oncologist and 12 cycles of Folfirinox, 10 months on my husband is doing great! I am so proud and totally in awe of him. He breezed through chemo, the only side effects being a bit of neuropathy in the fingers and toes which makes him susceptible to falling over but we learn to laugh about that. He did find chemo every 2 weeks too tough and we changed that to once every 3 or 4 weeks which worked great as it gave my husband time to recover each time. After the 9th cycle, his oncologist removed the Oxylaplatin from his cocktail because of the neuropathy and a scan this week after cycle 12, showed him still to be stable with no progression of disease. I have waited for those scan results before posting on here for fear of tempting fate!

Since diagnosis, he has gained over 4 stone in weight, has a healthy appetite thanks to medication and is just doing terrifically well.

I hope that my hubby's story will help those newly diagnosed and worried about Folfirinox that it doesn't have to be all bad, that everyone responds differently. Of course at the end of the day, we are very realistic about eventual outcome but he's determined he's not going anywhere any time soon so we live for the day and my husband simply remains positive at all times, no matter what is thrown at him.

He tells me daily that he's like weed and you can't get rid of weed that easily!

All the best and good luck to each and everyone of you affected by this evil disease.

PW xx

[Didge]

Hello PW. My partner was also misdiagnosed because of earlier kidney problems despite presenting with what the surgeon later called text book symptoms. A double failure as his mother had died of it too at a relatively young age. He was operated on just too late but did well on folfirinox and we had many good times post diagnosis so hope for the same for you two. Didge x

[sandraW]

Hi Proud Wife,

and welcome, wow I hope you have put in a complaint about the Urologist concerned, hopefully then he will be a bit more aware.

My husband too did well on Folfirinox sounds very similar to your husband, he put his weight back on after his P/C surgery and retained it well. He also had a very positive outlook and stayed his normal cheeky self, which is so important.

Like Didge we too had some great times together and with family and friends, and managed a 2 week holiday in Gran Canaria, and some short breaks too with our grandchildren.

Thank you so much for posting you sound like me a glass half full person, I hope your husband stays well, lots of people on here are doing really well even without surgery, take care sandrax

[Proud Wife]

Thank you both. I was actually a glass half empty person before his diagnosis but I'm learning from my hubby finally and seeing exactly what a positive attitude can do. Plus I'm sure the happy pills my lovely GP prescribed for me help! I struggled to cope with the news of his diagnosis for a good few months, hence the need for some anti depressants, whereas he just took it in his stride. The news just came out totally out of the blue and was a total shock.

Your story is similar Didge but totally shocking, especially in light of his family's history. Would you mind me asking how long he was on folfirinox for? Oncologist has recommended a 6 week break from chemo but will start hubby on a different chemo in due course. Not quite sure why as I read of someone having had over 30 cycles? Same question to you Sandra? Am I right then in that having had surgery, it was not stage 4 at diagnosis? Even after 10 months, I still have lots to learn about PC.

Because of the clinical negligence, I refer to him as Hubby btw at the moment so neither of us can be identified at present.

Can I ask please, because the last thing I want to do is put my foot in it and cause any distress to anyone on these boards is how can I find out the stories of the people posting? Reading both your posts, it looks like your husbands/partners have both very sadly lost their battle with this cruel disease? I'd be really interested to hear your own stories but not sure how to find them - took me half an hour just to find out how to log on and then another half an hour to start a new subject once my account had been approved hahahahaha!!

Have a good evening xx

[Guest]

Hi Proud Wife,

I hope you get comfort from being here, and knowing that sadly we have all been through the same feelings.

My lovely Dad was diagnosed in February 2014. He too was misdiagnosed several times, before he admitted himself to hospital. He was diagnosed at stage 4, with liver mets. He was given 6 months to live. He took part in a clinical trial in combination with gemcitibine. He tolerated it amazingly. Every scan showed the liver mets were shrinking, it even shrank on the pancreas at one point.

Unfortunately Dad couldn't have proper quality of life because he had constant severe diarrhoea, up to 20-30 times a day.

He had a chemo break, and then the scan afterwards showed it had progressed. He was then started in Folfox, not the whole of it, to help with the diarrhoea, which didn't really help.

Sadly, folfox did nothing for my Dad.

He also suffered a stroke, and lost movement and complete speech for his last week. I lost my wonderful Dad last April.

I really hope you keep posting here. I wouldn't have had anywhere near the amount of knowledge, if I wasn't here. I wouldn't have been able ti help my Dad as much as I did, and therefore he would have passed away sooner, I'm sure. There is always someone here that has experience in something. Someone will always help you and support you, regardless.

Leila xx

[Didge]

Hi PW. To look at someone's posts you click on their name and you should then get an option to see their posts and you will see ones they have started if you look at the name on the initial post. Yes, my partner lived for one year and 10 months after diagnosis. He was not stage 4 but locally advanced as the tumour was stuck to the spleen and stomach so it had started to extend beyond the pancreas but apparently they do not operate if it has spread to other organs distantly e.g. the liver which is the most common. He was on folfirinox for about 4 to 5 months but then had to stop as his blood results were too low. I wonder if they could have tried giving it to him every 3 weeks rather than every 2 but they didn't suggest that so he stopped. He could never tolerate gemcitabine at all and although they tried him on that again they had to pretty much stop straight away. I don't really understand why they are giving your husband a break if it is keeping the disease stable. Did they give any reason for that? Are they worried about neuropathy or other side effects? They did offer to try him again on folfirinox a few weeks before he died but he decided not to have any more treatment at that point. he lived for about 7 months after his last folfirinox. Your urologist certainly sounds negligent and I hope you successfully bring him to task. Sadly it is fairly normal to be misdiagnosed with PC but your story is a level above that as the evidence was in front of him but ignored. Good luck with getting somewhere with it! xx

[Proud Wife]

Really sorry to hear your lovely Dad lost his brave battle Leila and that he didn't have any quality of life during his fight, that's really not fair at all. I think it's really lovely and kind of you that you come on here and support others going through the same. Does it help you come to terms with what happened to your dad or do you just want to help others? I bet a day does not go by when you don't think of him?

I lost my Dad far too young to stomach cancer. I lived abroad at the time and when it became terminal, he didn't want me to see him fade and come over and visit anymore, preferring me to remember him the way he was. My mum cared for him and he remained at home throughout. It's only now, as I am going through the same, can I truly understand what she went through. My mum went to pieces afterwards and was never the same again. She suffered terribly from depression and really I think lost the will to live. She kept pranging her car and I did say at the time perhaps it was time to give up driving but sadly, she went on to have a very serious car accident which lead to her passing.

Curiously, she had her accident at the same age as my died but survived 10 days after the crash when she could have passed at any time due to the severity of her injuries. However, as soon as I arrived at the hospital on the morning of her birthday, she died. To me, it was as though my Dad wanted to give her the ultimate birthday present....being reunited with him. Can you believe the day after my husband turned the same age as my mum and dad (which I had been dreading for years because it's such a bad number to me) he started to get ill.

Didge, I followed your kind advice and have read through your previous posts. I am so, so sorry that life has delivered you not one but two very cruel blows. You are one very brave lady!!! Again, the same question to you purely out of interest because I see that you are constantly on here, helping others which is amazing, does it help with the grief of your loss? I just don't know how you coped after losing your husband so young and then to lose your partner prematurely as well. Life is just not fair to some people. How are you doing now, it must still be very raw and very fresh?

I would appreciate some advice. I too wondered why my hubby has been given a break from Folfirinox and won't carry on with it afterwards. I have to admit I struggle to retain some information because it's all too much but I do seem to remember the oncologist saying something about toxicity. I think something perhaps to do with the neuropathy? I can understand changing to a different type of chemo to perhaps avoid becoming resistant. Given what happened pre diagnosis and because we are still able to travel, we like to have complete medical records, so I have just received a copy of his latest CT scan report.

His oncologist showed us all the scan pictures from diagnosis to current date and we could see the effectiveness of chemo and how all tumours had shrunk. However, he did point out one liver metastasis that he wanted to keep an eye on. Looking at the CT report, the radiologist mentioned that it had enlarged since previous scan and conclusion was "one of the hepatic deposits demonstrates evidence of relapse".

On the basis that we felt Folfirinox, even without Oxylaplatin was keeping hubby alive with very little side effects, we did ask if chemo could continue without a break which the oncologist said was unusual for PC but hubby could have a 2 weekly cycle of a condensed version of Folfirinox as a maintenance plan. When we asked "what would you do if it was you" he replied a break, so we have taken that advice.

However, by my reckoning, if one of the liver mets is active, surely it's better to attack it now rather than possibly let it advance further? It's just so hard to know what to do for the best.

Any advice would be very gratefully received!

Thank you xx

[sandraW]

Hi Proud Wife,

I think its the neuropathy they are worried about plus the fact that if the tumour in his liver has grown the treatment is possibly no longer working. If the liver is compromised already, Folfirinox is such a strong drug combination, it would put the liver under even further strain due to the toxicity, as its the liver that filters all the drugs.

My husband Trevor had 6 lots of 5FU, after his surgery then when we found the cancer was in his liver, he had 6 rounds of Folfirinox. The 2 tumours shrunk by 50% they were very small anyway, but we knew from the tests done after the surgery Trevor's cancer was very aggressive. He had a total of 5 months off treatment, this was when we went away and he had a fabulous summer working in the garden. By the middle of August he was starting to feel more tired again and was back on treatment mid September he had a further 9 or 10 treatments, starting with full Folfirinox and then dropping some of the drugs and swapping them around to see if they could get better results. He had to stop treatment in February as his Liver count was too high to continue, he finally lost his life on 24th April He remained remarkably well, even though he did start to suffer with pain which got progressively worse, it was only in the last 3-4 weeks that he really struggled, so we were very lucky.

It is so hard to decide which path is best, but I am glad Trevor had the break, as he was so well and enjoyed that summer so much, he could put it out of his mind and pretend he was cured, his way of dealing with it all.

Every journey is so different, so hopefully after the 6 week break, your hubby will start on a different treatment regime and that will do its job and keep his disease at bay. A couple of people on here have changed from Folfirinox to another chemo and seem to be doing ok so fingers crossed for you both, take care sandrax

Edited January 22, 2016 by sandraW

[Didge]

Hi PW. I'll deal with your questions in two parts:

First, the medical questions. Apart from being governed by blood tests which often rule out a person having chemo that day (or if every treatment leads to a protracted period of weeks where no treatment can be given it will be discontinued completely) they usually aim to give folfirinox for an initial period of 6 months or 12 cycles with usually a scan after 6 cycles to see how it is working.

However, as far as we were led to believe, that is a guideline only and the most important thing (apart from whether it is tolerated) is whether a person's tumours show response or are kept stable. It appears that you have been advised to have a break, possibly, because you have reached the end of the 12 cycles of treatment. There might also be a question mark as to the one which has increased. Although my partner did have 2 remaining (after folfirinox) liver tumours ablated and treated with radiotherapy, I believe they were stable at that point so that might not be an option for the one which is increasing.

I assume you are at one of the specialist hospitals listed on this site (although I believe these are obligatory only for surgery so if your husband was not able to have surgery, you may not be).

If not, you could always ask for a second opinion from a different oncologist at one of the specialist hospitals. How long did they suggest the break would be? As a non-medical person, in my opinion unless they think the tumour which is increasing is indication that the treatment is beginning to not work, if it is working and is tolerated, it should continue. Our oncologist confirmed that sometimes when the tumours are being killed, if they are not completely killed off they can mutate into something more aggressive and that is what she believed happened to my partner. I am not saying this will happen in your husband's case and hopefully he will remain stable for some time.

In my partner's case he couldn't tolerate any more folfirinox so it was not an option to continue but I would definitely ask some questions as at first glance it may be that the break is dictated merely by the guidelines of having a break after 12 cycles, which is deemed the maximum recommended.

Secondly, the personal.

Although I have been on here quite a lot recently I do have periods when I am not on so much. Sometimes I feel drawn to checking up what is happening, particularly if one of our regulars is going through a hard time or is at a critical point. I like to help others if I can, but also I think it is important to have time away as it is a traumatic cancer to be involved in. Unlike other cancers, there is a lot of heartache to bear!

Good luck and do ask as many questions as you can think of!

Didge xx

[PCUK Nurse Rachel C]

Dear PW,

Welcome to the forum and thank you for sharing your and your husband’s journey so far! I know that this is a place where no one really wants to be, but thank you for sharing your story and offering inspiration and hope to others on a similar journey to yourself.

Firstly I’d like to say how sorry I am to hear that you initially had a very stormy ride to get to, what I can only imagine as an absolutely devastating diagnosis.

I would just like to respond to your question relating to stopping or taking a break in chemotherapy, in the hope that it makes things a little clearer for you.

Usually when FOLFIRNOX chemotherapy is offered, the intention is that treatment will be given over a period of approx. 6 months or 12 cycles.

Usually a CT scan is preformed half way through treatment (approx. cycle 6) to ensure that chemotherapy is working. If the CT scan shows that the tumour is the same size or ‘stable’ or if the tumour has shrunk it deemed positive, as the chemotherapy is working.

Once the 12 cycles of chemotherapy have been administered then usually another CT scan is planned and again the hope is that the cancer will be ‘stable’ or further shrinkage may be seem, both of which are seen as positive.

It is usual on the NHS that 12 cycles of FOLFIRNOX are offered. After the completion of chemotherapy, most people will be followed up 3-6monthly with CT scans and Ca19-9 monitoring. There are certain circumstances where people have gone on for further cycles of FOLFIRNOX (as long as there was clinical indication of the benefits of doing so), but this has been decided by individual Consultants on an individual basis. Currently there is no clinical evidence to say that that treating for more than 12 cycles is any more beneficial than treating for 12 cycles only. Individual considerations will include a person’s fitness, their bone marrow function and their liver function and their current side effects. Many Consultations may not wish to treat for more than 12 cycles when there is no clear evidence that it is beneficial to do so, however, as we know, there are some amazing people out there who are still having chemotherapy much longer than 12 cycles.

Once a chemotherapy regime has been commenced, there may be several reasons to stop chemotherapy.

1- If it is deemed that the chemotherapy is no longer being effective (so for example the tumour is sadly getting bigger)

2- If the chemotherapy’s side effects are severely comprising a person’s safety and there are concerns that giving more chemotherapy will actually do more harm than good.(Often a reduction in the dose of the drug is tried first before stopping a chemotherapy drug(s))

3- If a person wishes to stop chemotherapy.

If at any point during chemotherapy there are concerns that the chemotherapy regime is no longer being effective, then a CT scan (and ca19-9 levels) would be requested to confirm if the tumour was starting to grow again. If this is unfortunately the case, then usually this chemotherapy regime would be stopped and another chemotherapy regime would be started.

PW, you mentioned that all the tumours had shrunk and this is great news! You also mentioned, however, that there was one spot that they were a little concerned about and were keeping an eye on. Sometimes, when some changes are so small they cannot always say exactly what is happening, sometimes its nothing to worry about and they just like to follow up more carefully, sometimes with another type of scan, often a PET scan. If you have any concerns or further questions, then please do contact us on the Support Line (Mon-Fri 10am-4pm) 0808 201 0707 or drop us an email at support@pancreaticcancer.org.uk.

Ihope this makes things a little clearer for you?

Kindest regards,

Rachel.

Pancreatic Cancer UK Nurse Specialist

Support & Information Team

[Guest]

Hi Proud Wife.

I think about my Dad constantly, strangely enough, even at times I really shouldn't be! Dad was always the one person I thought would live forever. He was MY Dad, and I absolutely adore him. He was best friend and my hero.

I still come on here because this forum gave me so much. When I first joined, I was lost, and scared, thinking my Dad was going to die in 6 months. It was Didge, and Nikki ( another lovely lady that lost her husband ) that said to me, to chase everyone and everything up. Time is not something you can spare with pancreatic cancer. I remember Dad had a 2 week wait for a biopsy, I spent an entire day, racked up a £130 phone bill, but got my Dad in the next day.

I know how scared people are when first diagnosed, and they need to know they aren't alone. I want to help others, even if is just say chase these people up. Oncologists aren't aliens, they are human beings, and we shouldn't be afraid to approach them. I took a book with me, everytime we saw the oncologist, I wrote down everything and filled it with questions. The times I didn't go with Dad, I would send him with a piece of paper, and ask the oncologist to email me the answers. Dad never took anything in, bless him, how could he?

With regards to chemo, my Dad never wanted a break. He wanted chemo however he was feeling, until the cancer had gone. When they reduced it, he felt like he wasn't getting enough, even though he felt better in himself. They stopped his chemo, because every scan showed a shrinkage, the liver mets were small, and tumor on the pancreas had shrunk to, which is rare. They said to have break so he could have some quality of life. Because of the diarrhoea, he couldn't anyway, but he was constantly worried it was growing. 4 months later, it had.

We didn't know until much later, that Dad had 3 broken lower lumbar bones.

The folfox did nothing, and they said it had progressed far too much. Dad died a week later.

Like Didge says, this is a heartbreaking cancer. So many different things it can throw at you.

So, I am pleased your husband is like weed, I hope he is a strong fighting weed that keeps bouncing back.

Leila xx

[Proud Wife]

Oh my goodness, what a great place this is to be!! Firstly, a massive thank you to Rachel who has put my mind at rest. What you said in the last paragraph I think is absolutely spot on. I was focusing on one small spot without seeing the bigger picture that the rest of the tumours had shrunk. I also very much appreciate the heads up on Folfirinox - I had no idea! I just cannot imagine life without him so of course panic when I see anything that could possibly cause us trouble! I really am grateful for you taking the time and trouble to explain things by putting it all in context.I should also remember that all other tumours have shrunk.

Thank you for telling me about Trevor. I've now gone back to look at your posts Sandra and have read Trevor's story. Like Didge and Leila, your loss is recent so its very brave of you to come back here and help others too. I'm in tears just reading your stories so I can't imagine how hard it must be for all of you. I'm hoping to be on here for a long, long time to come inspiring others to join hubby's weed garden!!

Leila, your dad's story is terribly sad, how did they not realise he'd broken 3 lower lumbar bones? I can totally relate to what you say about thinking your dad would live forever. My dad passed away when my son was only 3 - as his only grandchild, he idolised my son and when diagnosed himself tried every treatment possible as his only wish was to see my son grow up. My son is 20 now and he seems to be handling the news far better than I am but he is exceptionally close to his dad and I wonder if he's in denial.Although my husband is far too young, it doesn't matter how old your parents may be, you just expect them to be there but in reality, we never, ever have them for long enough.

Thank you too Didge for your lovely post. I can understand totally why you would need a break, it must be very hard sometimes to read what others are going through because it must be a reminder of your own loss. Having read all 3 of your stories now, I see that all of your losses are all very recent so I can only but imagine how raw it must be but am really, really grateful for your support.

Take care xx

[Proud Wife]

Sandra, I've just seen your last post over on Catherine's thread - if you ever feel lonely, I'm always up for a good natter and being of very cuddly proportion, have a very big shoulder if you ever need!

I gave up smoking 3 years ago because of throat problems, put on 4 stone of weight and you've guessed it, became diagnosed as type 2 diabetic a year ago. Of course, when I started to research PC, I was then convinced I had it too as sudden onset is of course a symptom but thankfully my lovely doctor arranged for me to have a CT scan to check and put my mind at rest.

Didge, I was heartened to learn that you are expecting your 2nd grandchild next week. How very exciting! I hope that whilst getting to know you all on here, we get to hear lots more good news like this. Good luck to all and here's wishing the mum to be a safe and easy delivery xx

[sandraW]

Proud Wife,

That is so kind of you to offer your support to me, I too am of cuddly proportions, so I know what you mean about the shoulder. Great news about Didge's granddaughter isn't it I too am expecting another grandchild, but not until the end of June, so we don't know what it is yet, but life carries on and gives us new things to look forward too, thanks again love sandrax xx

[Proud Wife]

Your shoulder is probably not as big and squidgy as mine I bet!

Congratulations Sandra! How many Grandchildren do you have so far? How many children? As I mentioned before, our son is only 20 so grandchildren a long way off for us, although I'm very much looking forward to the day!

It's so lovely to hear positive news and as you say, it's something for you to focus on. I don't know about you but I find that time goes by so fast these days and it will be June before you know it.

Take care xx

[Judith16]

My husband was diagnosed with stage 4 PC, 2 weeks before Christmas. 2 weeks prior to that we had been told that it was cancer, it was not until the biopsies we were told it was terminal. Our lives have been turned upside down by the news, my husband is on overdrive trying to sort out everything to make life easier for me when he is not longer with us. My husband has only had two cocktails of abraxane / gemcitabine. He then got a chest infection which has left him low. More blood tests tomorrow and seeing consultant on Tuesday evening. Hopefully Chemo will restart next Thursday. Creon has been helping up until this weekend, when lets just say the world is falling out of his bottom!! He feels he has gone back to before his diagnosis and is extremely worried as is I. We have 3 children and 2 grandchildren (grandkids are just 4 and 4 months). My husband was planning to retire around in a few years, so we could have some quality time. this was due to my nagging as my dad passed away at 64!! My mum never forgave my dad for leaving her before they had any retirement together. My husband is 53 and I have promised him that I will not be bitter. The ups and downs the roller coaster of not knowing is just driving me potty. One day at a time is my new mantra

[Guest]

Hi Proud Wife,

They thought it was sciatica, as he suffered with it before. He was bending down to pick up his shopping out a taxi, and he felt them snap. He still made himself a roast dinner every day, and he still hugged me goodbye everytime he saw me. He was so brave. Passed away only 63, it's no age.

How is your husband? What are his symptoms at the moment? Does he get on with creon ok?

Leila xx

[Proud Wife]

Hi Leila

Hope you are having a good weekend. I've spent some time reading up on some stories over the weekend and am totally shocked at how some people either pass too young or have no quality of life after diagnosis, just like your dad. Also reading some of the battles, like Sue's mum - what a brave, strong lady she must have been to fight so hard.

Your Dad sounds as though he was incredibly brave. Wanting to and being able to make a roast dinner every day is amazing. Its so lovely that you have an affectionate dad, why wouldn't he have wanted to hug you - everyone needs a hug! My hubby, son and I tell each other we love each other every day. Was it the cancer that made his bones break? Sounds truly horrific.

My hubby is fine thank you very much for asking. He's actually better now then when he was working, I suppose early retirement suits him, rather than the stresses and strains of his job. If you saw him, you'd never know he was ill. I'm not sure if we are allowed to post details of medication on here so I won't name names but at one stage, he was so thin, the skin was hanging off him. We went to see his pain management specialist about 6 months ago now, who gave me excellent advice regarding anti sickness tablets and steroids and we've not looked back since. Those have given my husband his appetite back and he now eats more than me which is saying something! He has no need for creons. That's just it, he knows and I know what's going on but to the outside world, you'd never guess, other than perhaps a swollen face which is either due to the steroids or 4 stone weight gain! We've actually been told to cut down now on the steroids to avoid muscle wastage - we just wait and see now what the next 6 weeks have to bring, see what his bloods test results are and take it from there.

He always said when my dad died from cancer that if it happened to him, he'd never have chemotherapy or treatment but that changed on diagnosis because he says he's not ready to leave us yet so I'm really, so very proud of him that 10 months later, despite advanced stage 4, he's doing so well. I only hope and pray it carries on that way. With his positive attitude, I'm sure it will!

lots of love xx

Edited January 24, 2016 by Proud Wife

[Proud Wife]

Hello Judith

Thank you so much for posting here. I know it took me a while to pluck up the courage - I was scared to post in case I tempted fate because it's so far so good with us after a rocky few months.

I'm so very sorry to hear about your husband, he's far too young too. I think it must be very hard not to be bitter but of course, he doesn't need to know that. I totally relate to you about the not knowing. I spent the first few months worrying about when it was going to happen, how it was going to happen and how I would cope without him but now realise I need to be enjoying every single day with him. Worrying about the future won't change things and I know I shouldn't spoil the time that we do have left today but sometimes that's easier said than done. I'm sure my son will fly the nest in the next few years and I don't relish growing old on my own. Like your story, we've not got to retirement age either so it's only natural that you feel cheated.

Had your husband been ill for long before diagnosis? I sincerely hope that once chemo restarts your husband will start to feel a little better, I would say it took a good 3-4 months for my husband to be on the up. When he was first diagnosed and I started to research PC, as I had no idea about it, I was absolutely convinced he was going to pass before the summer was over and couldn't ever see his health improving but it did and hopefully in a couple of months time, you'll be saying the same too.

Best of luck with the blood tests and consultant's appointment on Tuesday, let us know how you get on.

lots of love xx

[Judith16]

Hi

No he had not really been ill for long, tired, losing weight, discomfort. They thought it was gall stones, kidney stones or stomach ulcer. As we had private health insurance we were sent for a CT scan after the results for the above came back normal.

Its just been a bad weekend!!

[Proud Wife]

I know - don't forget, you are probably still reeling from the shock of your husband's diagnosis and the unfairness of it all. You said it yourself earlier, it's a roller coaster of emotions and you are going to have a bad weekend here and there. Tomorrow is a another day and hopefully in the morning if you've been able to have a good night's sleep, you will feel a little stronger to cope with what's being thrown at you. If you want to have a chat either by email or by phone I think you can ask for your details to be passed on to me somehow? Perhaps Leila, Sandra or Didge could advise further if that's something that would help you Judith?

You've taken the first step to come on here and chat which I hope will help you. I've only started posting in the past few days but suddenly, I don't feel quite so alone anymore!

Night night xx

[PCUK Nurse Jeni]

Hi Judith,

Although not nice to be saying this, but welcome to the forums.

So sorry to hear about your husbands diagnosis, and the shock you have all had from such a blow as this.

We hope that you find some help and comfort from the forums, and we know there is a very supportive community on here.

In the meantime, should you wish to contact us, please feel free on support@pancreaticcancer.org.uk or call the freephone number on the home screen.

Kind regards,

Jeni, on behalf of nursing team.

[Didge]

Hello Judith, you can always ask the moderators if you want to be in contact privately and they will act as go betweens until both parties have given the ok. And if anyone ever emails me and does not get a reply, it's because I haven't received the email, which has happened before! Yes, one day at a time is the way to go - but as you say, easier said than done sometimes. Hopefully your husband will feel better soon and able to restart his treatment. It is definitely a roller coaster cancer and people can be in awful states and then recover to a great extent for longer periods. Seize the moment when things are good and have some good times when you can. x

[Proud Wife]

Hello Didge, any news on the imminent arrival? Hope all is well with mum to be!

Not sure if I should be starting a new topic but I have a question regarding CA19-9 markers? Having read quite a few stories now on this forum, I have noticed that everyone seems to have had much higher markers than my husband.

Hubby's tumour marker was 109 when diagnosed at "advanced stage 4" which went as low as 22 at one stage during chemo and on last blood test was 33 which is still within normal range. I don't understand how his cancer could be so advanced with such a low marker, when other people have markers in the thousands. Does this mean his cancer is not so aggressive or am I clutching at straws?

He's never had a biopsy taken; he was quickly put on folfirinox as soon as he was diagnosed but again, I see that many people have had biopsies taken. These are 2 questions I keep meaning to ask his oncologist but keep forgetting!

Any comments gratefully received, thank you!

[Guest]

Hi Proud Wife,

You don't need to start a new thread, unless you want to of course. This is YOUR thread. No one else's. When people are thinking of you, they will come to this thread. If you started on someone else's thread, then no one could find you, and you wouldn't get the support you deserve, as you wouldn't have your own 'story'. Does is make sense?

With regards to Ca-19 number, it is quite an individual number. For example, 100 could be really high for me, but for you, it could be a low number. I think what is probably best, is take the first reading and compare others to it when you get them. I have found that you have to ask for future results of these. I was only given the first results and I had to make a point of chasing the others.

I know when Dad was first diagnosed, his number was 1200. As the treatments went on, it came down, and was 200 something at ine point. After his break, it went to 25,654. So obviously that number was incredibly high for my Dad. Have I been clear? If you want it explaining a bit better maybe Didge will reply, she is better with words.

I am a bit confused though as to why your husband hasn't had a biopsy. How do they know what they are dealing with? I would most definitely give the oncologist a call and ask him why one hasn't been taken. Sorry I can't help you more wih that, I really don't know why he hasn't had one.

Leila xx