Totally in awe of my wonderful Husband!

[Proud Wife]

He's very good at the moment, thank you very much for asking Leila. Did you do anything special to mark what would have been your Dad's 64th birthday? How did you cope on the day? As I said before, the first of everything will always be always the hardest.xxx

[Guest]

I'm pleased he's doing well. It must be hard for him to keep it to oneside in his mind and concentrate on the now. He must be a very proud and determined man.

It was a very tough day. I was ok when the day started and then my Dad's cousin text me, and that was it for the rest of the day. I sat next to Dad's ashed for the rest of the day. My Mum sent me a rose for him. I also got a job offer on the day, a day early as well, so I am sure Dad must have helped out with that.

Leila xx

[Proud Wife]

Hi Leila

Well done, you got through the day. The first of... is always the hardest. Many congratulations on the new job offer, I am absolutely certain your Dad helped you out there so I hope you are going to accept?

Not fantastic our end I'm afraid. Hubby has been really quiet and rather withdraw. Lately very sleepy and no appetite. The weight gain I so proudly helped him with is starting to come off slowly but surely. It's now gone 5.30pm and he's eaten nothing all day. This is how he was just before diagnosis. Blood tests show CA19.9 marker at 47 which is only +1 from 4 weeks ago so that's good and he's having a CT scan tomorrow to see if anything is going on. I am hoping and praying it's just an infection causing it but one thing I don't understand with the blood results is, they normally show CA19.9 and CEA markers, this time it was CA19.9 and CA15.3 which when googled, relates to advanced breast cancer. I've never seen CA15.3 results before but hubby's was elevated.

He has also said he's pulled a muscle on his right hand side but he told me he'd pulled a muscle a few months before he was diagnosed so that's set alarm bells ringing, especially when bloods show liver function not as good as before. The last CT scan showed one of the liver mets growing so of course I'm wondering if that is the problem.

Purely out of interest, has anyone with PC ever had CA15.3 readings unrelated to breast cancer? Hubby fell ill last Easter so it feels as though history repeating itself again today On the positive side, he's had 9 great months out of the 12 but of course I can't help but worry when I see him unwell.

Thank you xx

Edited March 22, 2016 by Proud Wife

[Guest]

Hi Proud wife.

Sorry to read your husband isn't feeling too well. Is he still receiving chemo? When you say he has a pain on the right, whereabouts exactly is his pain there? Is it just under his ribs? I think you should ask to see the oncologist tomorrow when you go for the scan. He needs to know about that so he can give the right medication for it. I should say this is why his appetite is poor. Could he try to eat some porridge or something simple like that?

( i accepted the job, this is my second week. Thank you for asking. )

Leila xx

[Proud Wife]

Hi Leila

Good! I'm really pleased that you took the job, I hope you are enjoying it and have some good work colleagues. I personally believe that our loved ones look down on us, there's been too many coincidences in my life to suggest otherwise but I appreciate everyone on here has their own beliefs. Reading between the lines, I think you are probably the same, especially when you felt your dad helped you get this job.

No, hubby's not had chemo now for 2.5 months. I would say under the ribs but towards his back which to me would indicate liver? I've just taken his temperature and it was 37.7 which is not high but I'll keep an eye on it. Oncologist is away on a course so I've just sent an email to his pain management specialist to see if she can point me in the right direction. I don't want him to get worse and then find ourselves in the middle of Easter and it being difficult to see a doctor. This is exactly what happened last Easter and he was left in agony. I don't want a repeat of that!

I'm a bit of a novice because this is the very first time he's not been right since his condition was stablised 8 or so months ago so I know we've been very lucky.

He's managed a natural yoghurt tonight but he gets very narky if I suggest food options so I've learnt to keep quiet! He doesn't like fuss which makes it a little hard for me because I try not to question him more than I need to. xxx

[Guest]

Dad got pain just underneath his ribs. That was his liver, it made him very sleepy. I contacted his oncologist and he wanted Dad in to have a look and give pain relief. Dad refused to go, and it got worse, so I called an ambulance but it didn't turn up.

I do feel concerned about your husbands pain, because he really needs the right pain relief for it. Is he taking anything at all.

Dad had oxycodone by mouth for it and it did take quite quickly. I really really hope someone gets back to you first thing and gets you a prescription.

I can understand him being a bit off with regards to food. Dad would say you don't know what it is like, it isn't like when we have no appetite. I think it must frustrate him, as he must know he needs to but it must worry him that he can't.

Can you call them if they don't get back you immediately in the morning?

I don't really like to talk about menial things when your husband is so poorly. But yes, job is going well. It is a large company, 2000 staff, so a lot to take in and remember. If I hadn't got the call on Dad's birthday, then I wouldn't have believed. But I do really believe my Dad got me this job, and so I will try hard for him.

Leila xx

[Didge]

Hi PW, your question intrigued me because occasionally pancreatic cancer can be linked to the BRCA gene. My partner was tested for it but was negative - I had discussed with his oncologist that I had heard of some pc patients in America being treated with breast cancer chemo instead of pc chemo when they tested positive for the BRCA gene. She said this was true but was 'cutting edge'. Has your husband been tested? Is this why they are monitoring his levels? As for nutrition, can he take the fortisips or ensure 'shots' which are smaller than the regular drinks? My partner managed to get those down as they can be swallowed in a single gulp even when they are not able to take much. As always I believe they need to be on prescription but you could maybe ask your pharmacist - and yes, making sure you have adequate pain relief over the Easter weekend is important. Good luck (and congrats on the new job Leila!) xx

[Guest]

Hi PW,

Hope you get hold of someone this morning. Please let us know how you get on.

( thank you Didge )

Leila xx

[Proud Wife]

Hi Leila and Didge

First of all Leila, your job is not menial things at all and I actually quite like the diversion from PC talk sometimes because it can take over your life if you let it. I particularly love to hear things like that because it reaffirms my beliefs. You will do your Dad proud no matter what and I hope you can take comfort in what I would call "a sign".

I have no idea if he was tested for the BRCA gene Didge but I did come across the following:-

Other Conditions Which May Cause an Elevated CA 15-3

There are several conditions - both cancerous and benign - which can cause an elevation of the CA 15-3 level in your blood. Some of these include:

Other cancers, including uterine cancer, lung cancer, pancreatic cancer, liver cancer, prostate cancer, and colon cancer.....

I suppose we will find out tomorrow when hopefully we get results of CT scan. After I posted yesterday, he suddenly went downhill with a raging fever. Luckily I had some antibiotics in the house which I always take with me when we go away and after speaking to out of hours doctor late last night, I started him on them and then woke him up at 4am for another dose. Took him to doctors today and he's got a urine or kidney infection and possibly he's dropped another kidney stone which is where this all started literally a year ago now to the day! The CT scan will show if he has and it can be sorted by a quick operation so I'm hoping and praying that's whats been causing the lack of appetite and sleepiness and it's not progression yet.

Thank you so much for caring, I don't feel quite so alone xx

[Guest]

Hi PW,

I really hope it is a kidney stone and then he can hopefully get back to eating. How is he feeling today?

Do believe Dad helped me with the job, especially with it happening on his birthday. I felt he was trying to help me,

Leila xx

[Proud Wife]

I am one very happy (easter) bunny today! Just spoken to oncologist's secretary and have been told the CT scan showed no change which is amazing news. I'd convinced myself it was progression but now with the wonderful benefit of hindsight, I can see his diminishing appetite over the past weeks is probably because of either his kidney stones or infection. He's been asleep since 8pm last night so I still need to get him better and am a little worried that it's a bank holiday weekend - last Easter he was left in agony as we couldn't access the right people after he'd had his first kidney stone operation but I'm on the case. xxx

[Proud Wife]

How stupid am I today, I came on here to ask a question about biopsies and today forget!!

We have appointment with oncologist on Tuesday to discuss future treatments and was told the next step is a biopsy. I have absolutely no idea of what that entails because a year ago when he was diagnosed on the basis of scans and tumour markers, he was put on Folfirinox which did what it said on the tin thankfully!!

I'd very much appreciate hearing from anyone who's had experience of this. Is this done under local or general anaesthetic? Does this carry any risks? I understand it's to determine what would be the next appropriate treatment but would just like to know more about the procedure itself. Hubby is not the best patient. That's actually an understatement!!!

Thank you xx

[Didge]

My partner had his biopsy done after they had removed the tumour which is the easy way! Here is a link to different ways it can be done in situ:

http://www.cancerresearchuk.org/about-cancer/type/pancreatic-cancer/diagnosis/having-a-biopsy-to-test-for-pancreatic-cancer

I am glad you had good news for Easter and hope your husband is comfortable over Easter. xx

[Proud Wife]

Thanks for that Didge.

I'm afraid I appear to have spoken too soon. Don't ask but we've now been told there is progression from looking at the same scan which is pretty gutting to say the least. I feel like I'd won the lottery only to find out I forgot to buy a ticket. Currently waiting for him to be admitted for intravenous antibiotics and treatment for a kidney stone which is just an extra for him to battle.

I am normally such a strong person but this all reduces me to floods of tears when I hear news like this. I wish I could cope better.

[Guest]

Hi PW,

So, you have been told it is a good scan result and then a bad one? That's disgusting, I would ask for someone who knows what they are talking about to read the scan and tell you again. This is just incompetence.

With regards to the biopsy, Didge gave a good link. Dad had a biopsy during a laparoscopy. You can have sedation during that, but Dad was scared of being put to sleep in case he never woke, so he did all tests like that without sedation.

And by the way, if someone can go through watching a loved one like this, and not break down, then they are not human. He is your husband, you love him.

Leila xx

[Didge]

Well said Leila. We lived for even slightly good news, clinging on by the thinnest of threads and it didn't take much to bring our world crashing down. But you pick yourself up and carry on. Maybe it's time for the folfirinox again if it worked well before, PW. I do hope the antibiotics make him feel a bit better. xx

[sandraW]

Hi PW,

I hope your hubby is feeling a bit better now, its weird how these things always seem to go wrong over a bank holiday.

Hopefully when you see the oncologist on Tuesday he can explain the scans to you, and work out the next step.

I am a strong person too, but I cried buckets when Trevor was ill, tried not to do it in front of him, its probably better for you that you can cry, other wise the pressure just builds and builds.

As Didge says the Folfirinox worked last time and hopefully it will again, we used to need 48 hours after bad news to digest it and then it was onwards and upwards, I am sure you will be the same.

take care sandrax xx

[boa]

Hi PW I'm sorry to hear of the issue of conflicting news. Your husband has done well so far as have you. Like others posting here I am strong but there were some very scary moments. I have no complaints about the NHS but interpretation of scans is complex and we felt confused a couple of times. Hope you have a settled weekend.

[Proud Wife]

No Boa, this is private healthcare (BUPA) at it's very best! As if misdiagnosing him at the very beginning at Easter last year was not enough. It's amazing but it's literally a year to the day that our nightmare begun, only we didn't know until 18 April what was making hubby so ill at that time. Then 2nd Easter in a row, where we have to sit and wait for answers.

I am so very upset today. I have been hassling for the past few days to get to the bottom of why my hubby had suddenly become so unwell. I arranged for bloods and CT scan to be pushed forwards by 2 weeks to get some answers. Thank goodness I did - everyone out there, ALWAYS trust your instincts. We were due to get CT results and because of the misdiagnosis, I always insist on being sent a copy of the CT report. When I spoke to oncologist's secretary, she said very clearly the scan showed NO CHANGE. I questionned it three times because I wanted to make absolutely sure it was not the cancer but the infection and as you can imagine expressed sheer delight that he was still stable. WRONG. It appears there has been some very quick and serious progression since last scan in January, yet she thought it appropriate to tell me that there was no change. I was told that the report had not been prepared and the oncologist had verbally spoken to the radiologist. Now I fully appreciate, having now seen the report, it was not something she might have wanted to send to me before oncologist appointment but surely there's NO excuse for raising our hopes like this.

It was only because I then involved my husband's urologist to investigate CT scan from a renal stone perspective that we found out that all was not well and fortunately, he told us what was really going on so deep breath, as my hubby was doing so fantastically...

Spread to spine with collapse of one vertebrae. The liver met on the grow from January scan has gone from 3.3 in size to 7.4 x 5.7 - is that excessively large for a met? Liver also have new mets and existing ones grown too. New mets on adrenal gland and something I'm not quite sure of - distal pancreatic ductal dialation.

Does this mean we have jaundice shortly to look forward to? Nothing is sinking in at the moment and I'm all googled out so advice there please. This is all in 2 months so it's incredibly hard to sink in at the moment.

Also, has anyone had any experience of mets spreading to spine? If so, what can we expect please? Truthfully, not sugar coated!!

The next thing I need to ask is, we've been told there will be a liver biopsy to decide next steps when we were previously told it would gem/abraxane next. I will be calling the specialist nurses on Tuesday because I've lost all faith in medical profession but to help me over the weekend because I've been panicking - would you expect a biopsy after 1 year and if you cut into a tumour, does that not make it spread faster?

If MSH happens to read this post and I don't know if there is a way of sending him a DM on this forum, is my hubby a candidate for nanoknife please?

On a positive note, my hubby who is absolutely incredible, is now walking around the house without a care in the world, as right as rain after a night in hospital with fluids and intravenous antibiotics. You can still not tell from the "outside" that he's ill at all so I have faith that he will continue to fight this evil disease.

Me on the other hand, had my first ever hypo today. I'd not slept all last night so once hubby was home and settled, I took myself off to bed. Being diabetic and far too fat, I thought it would be a good idea to take advantage of no appetite and not eat, forgetting that I'd taken my medication. My hubby woke me up as it was getting late, thankfully he did because I felt really awful and had to hit the glucose tablets!

Thank you all for your lovely comments and like Sandra says, I am sure I will bounce back after a couple of days. Anything that anyone can share with me would be very much appreciated. it's just so frustrating to be delivered this type of blow over a bank holiday weekend. I'd half expected progression, although reeling from first of all being told he'd stayed the same which I personally think is unforgivable but perhaps I'm too emotional today, to being told the true reality of the situation. xxx

[Proud Wife]

P.S. I meant to say, I am a very very very very very very proud wife this evening!!!!

[Guest]

Hi PW,

How devastating your post reads, and I really am so sorry to be reading it.

{Part of this post has been removed due to its defamatory nature, and inappropriateness on an open forum - Moderator}

Is your husband being offered any treatment?

How is his back? Is it very painful for him? Dad had 3 collapsed lower lumber bones, but that was down to chemotherapy. {This is not a side effect of chemotherapy - chemotherapy does not cause bones to collapse. Malabsorption due to lack of pancreatic enzymes can cause osteopenia, which often leads to weakened bones, and probably the reason the vertebrae collapsed - Moderator}

We never had a biopsy after treatment had started, dad had his before.

I am sorry I cannot help more, I really wish I could. When Didge reads this, I am sure she would be able to answer this for you, she is clued up to answer it.

I think your husband is very brave,

And also, not eating is not going to help your husband. If you don't eat, you will have no strength, regardless whether you need to lose weight or not. You play a huge part in this. You are his strength. I know that is easy to say, and to be honest, there were times I did the same. Your mind needs to be sharp, especially with the hospital you are dealing with.

Leila xx

[Proud Wife]

Thank you so much Leila, I was okay until I read your last paragraph! It will be the first and last time I do that, promise. I've not really managed to get my diabetes under control yet because I was diagnosed just before hubby fell ill and my sugars have always been high. I had no idea they could fall as low as they did today. Lesson learnt. I also don't often experience no appetite but news like this is a great diet not that I'd recommend it!

My son and hubby are in the other room watching Jimmy Carr. They are roaring with laughter thankfully, this is why I'm so speechless, my hubby touch wood is back to his normal self now the urine infection has been treated (in my ramblings, perhaps I didn't make it clear that a GP test showed all sorts in his wee) and when I couldn't bring the fever down, I got him admitted to cancer ward for antibiotics.

Leila, we won't know until Tuesday. As far as oncologist and his secretary are concerned, we don't know there's been progression and probably think we are out celebrating. I just don't understand why she couldn't have been more tactful and said the CT report had not been done or something like that, rather than tell us no change. And she 101% said that. Three times. she also said before I found out the true results that hubby would have a biopsy which at the time sounded strange because it was not we'd talked about before. When I asked her for the report, she said it had not arrived yet but radiologist had talked oncologist through results and that everything was okay. I now know that to be a lie because I can see the report was faxed to her yesterday. She was very cagey when I said the urologist would then look at the scan to check cause of urine infection as hubby has kidney stones and she said to me, oh he won't be able to see that from the scan. Oh yes he can, because the scan for kidney stones when this all started showed the liver lesions, only the radiologist failed to note them. A chest/abdo/pelvis scan will show all organs, not just the ones she didn't want us to hear about. I am still devastated to be treated like this. i have no clue why she could be so cruel.

Anyhow, we don't know if there is treatment, I sincerely hope there is otherwise we are pretty pooped. this is why I'm hoping and praying MSH comes on this weekend because I'm wondering about the possibility of hubby being suitable for nanoknife but as a true novice, I think the liver is the biggest cause for concern at present. How many mets can the liver accommodate?

And no Leila, no pain at all! The pain in the side of the ribs could be a kidney stone but it's gone. What does it mean when bones collapse? Does it mean hubby is walking around with a broken back - its T7 level? You see I have so many questions but no-one around to answer them. Are you sure your dad's broken bones was chemo and not spread?

I am so so so pleased to have found this forum, I'd be totally lost without you guys. xxx

[Guest]

I won't go on too much about the rubbish care you are getting, because I could go on all day. They don't realise that they are not in normal jobs. They are dealing with peoples lives, literally.

Lumbar bones are the lower part of the back, where the back goes in. I think thoracic is mid back, the most outer part of the back. Dad couldn't bend down or turn/twist. I don't think you use the thoracic part ro bend or stand, but again not sure. Take comfort in the fact he has no pain. I know the thought he has a broken bone is not very nice, but if it is 't causing his pain, then try not to the think about it. Just focus on the things that are bothering him.

Have you got yourself a book/ notepad? If not, I would get one. Every time you get a question, write it down, and then when you see the oncologist, take it with you and ask the questions and write the answers in as well. Then you google the answers and ask them here.

Leila xx

[boa]

Hello PW. I read back over your story and remember now that you had BUPA care. I know from experience that as a wife it is difficult to cope. I'm surprised that the oncologist's secretary actually commented on results as from our experience anyone other than the oncologist would decline to say anything. I also know how waiting during holiday periods is ever so difficult. The fact that your husband is enjoying entertainment is a good sign. Pancreatic cancer is a complex disease and you can see from the posts here how it progresses differently in different people.

[Proud Wife]

What can I say? We are a number. We are a meal ticket. But we have feelings and emotions and the more I think about it, now I'm over the shock of how quickly it's progressed, this should never have happened.

I can't blame the secretary for commenting because I made it very clear I needed to know the results of the CT ASAP in order to determine if it was the infection or a progression that had made him so poorly last week. Oncologist was away at a conference so she was acting as go between. I told her I fully expected progression before CT scan was carried out and she is perfectly aware my hubby is not one that wants facts sugar coated. Rather than give us false hope and lie, which was exceptionally cruel, she should have made some excuse such as CT report/results won't be available until after Easter, if she wasn't allowed to tell us the truth. She also said CT report had not been written yet and that radiologist had spoken to oncologist and reported "no change" verbally but that's a lie too as we now have a copy of the CT report and can quite clearly see the date the report was prepared and faxed to her.

Now the shock has worn off, I just feel incredibly sad but fortunately have been able to stop crying! I think I was being too hard on myself and I've now come to accept that I'm entitled to a 48 hour wobble as Sandra has quite clearly pointed out when bad news arrives.

When you look at the CT report and see the extent of the spread, I'd expect that person to be flat out in bed. Now the antibiotics have worked their magic and with the help of some additional dexamethasone, hubby is back to his normal self, albeit with far less appetite and a lack of energy. Weight stable, thanks to ensure and pro cal shots. This just reinforces my hubby's strength of character and determination to remain weed because you can't get rid of weed. Also the reason why I call myself Proud Wife on this forum!!

I am concerned what the physical effects of a collapsed vertebrae may be but am comforted (if that's the right word) that your Dad Leila had 3 breaks. I seem to remember from your previous posts that he didn't even know that at the time? Hubby has no pain really but then again, he is on quite strong morphine slow release so perhaps that masks it. When he said he'd pulled a muscle in his side, I actually wonder if that was when the bone snapped as where he pointed to is exactly the same level as T7.

I was also panicking about the size of one of the liver mets but Dr Google here has found other people on other sites reporting much larger ones so Who knows. We will find out more on Tuesday when we see the oncologist. In the meantime, I try to switch off but easier said than done.

Thank you so much for your support, it means so much. I have indeed started writing down questions by the way Leila, thank you for that.

Hope everyone having a good easter and eating far too many eggs!! xxx