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Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: Totally in awe of my wonderful Husband!

Postby Didge » Thu Mar 24, 2016 11:13 pm

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
Posts: 1039
Joined: Thu Oct 31, 2013 5:38 pm

Re: Totally in awe of my wonderful Husband!

Postby sandraW » Fri Mar 25, 2016 12:57 pm

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
Posts: 131
Joined: Thu Jul 09, 2015 1:13 pm

Re: Totally in awe of my wonderful Husband!

Postby boa » Fri Mar 25, 2016 2:34 pm

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
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: Totally in awe of my wonderful Husband!

Postby Proud Wife » Fri Mar 25, 2016 8:11 pm

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
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: Totally in awe of my wonderful Husband!

Postby Proud Wife » Fri Mar 25, 2016 8:17 pm

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

Fifi

Re: Totally in awe of my wonderful Husband!

Postby Fifi » Fri Mar 25, 2016 8:33 pm

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
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: Totally in awe of my wonderful Husband!

Postby Proud Wife » Fri Mar 25, 2016 8:53 pm

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

Fifi

Re: Totally in awe of my wonderful Husband!

Postby Fifi » Fri Mar 25, 2016 9:15 pm

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
Posts: 131
Joined: Thu Jul 09, 2015 1:13 pm

Re: Totally in awe of my wonderful Husband!

Postby boa » Sat Mar 26, 2016 10:31 am

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
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: Totally in awe of my wonderful Husband!

Postby Proud Wife » Sun Mar 27, 2016 2:28 pm

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

Fifi

Re: Totally in awe of my wonderful Husband!

Postby Fifi » Sun Mar 27, 2016 2:54 pm

Hi PW,

Nice to see you on here.

Dad had 3 collapsed lower lumbar bones. He felt his break when he bent down to pick his shopping up. The taxi driver wouldn't help him. He was in absolute agony with it. I thought it was just sciatica. He couldn't bend to put socks on and needed a stool at the side of him to him up and down. Once he was up, he was ok. The lumbar bones are the ones you bend with.
He had morphine, but he overdosed on it as he was desperate for the pain to go away.

Do you know how many liver mets he has?

Leila xx

Proud Wife
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Re: Totally in awe of my wonderful Husband!

Postby Proud Wife » Sun Mar 27, 2016 3:20 pm

Good to see you on here too Leila!

He has multiple liver mets, the largest one we've been told of is 7.4 x 5.7cm so if he has multiple, I'm concerned about the amount of cancer free liver. He has no jaundice or itchy skin by the way. He also has spread to adrenal gland (one met) and who really knows how advance the spinal infiltration is - suppose he would need a PET or MRI scan for that?

Oh your poor Dad and shame on that rotten taxi driver. It makes me really sad to hear he was in so much pain. I must thank my lucky stars that hubby has none at all. xxx

MSH
Posts: 228
Joined: Tue Apr 30, 2013 11:03 pm

Re: Totally in awe of my wonderful Husband!

Postby MSH » Sun Mar 27, 2016 3:59 pm

Hi PW, I'm sorry to read of your problems and hope your husband continues to feel ok in himself. I'm afraid that only professor will be able to answer your question about the nanoknife. I know that some hepatic metastases don't necessarily preclude treatment, but this is probably dependent on their size. When I first contacted him I had a bony secondary but he felt able to go ahead because it wasn't absolutely typical. It subsequently spread through several adjacent bones but fortunately at the moment is quiescent after radiotherapy and chemo.

I can help with some of your other questions. Collapsed vertebrae are actually quite common and mean the usual disc shape weakens and becomes wedge shaped. It is often painful initially but settles with time. The usual cause is thinning of the bones though it could indicate tumour involvement, especially at thoracic level. Dilatation of the pancreatic duct is usually secondary to obstruction. There would only be the risk of jaundice if the biliary duct was also obstructed.

Hoping your husband responds to his treatment.

Mark

Proud Wife
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Re: Totally in awe of my wonderful Husband!

Postby Proud Wife » Sun Mar 27, 2016 4:23 pm

Hi Mark

Thank you so much for your comments.

CT report says new T7 infiltration and associated collapse without osseous retropulsion so I am assuming it's tumour involvement.

Just one last question if you wouldn't mind please. After 1 year, do you find it strange that they now want to do a liver biopsy? My hubby is very nervous to do have a biopsy as he's really worried once you cut into a tumour it spreads more? What's your view please?

Proud Wife
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Joined: Sun Jan 17, 2016 9:28 am

Re: Totally in awe of my wonderful Husband!

Postby Proud Wife » Sun Mar 27, 2016 4:50 pm

Oh and kidney stones and extensive colonic diverticulosis whatever that is, for good measure! At the moment the kidney stone that has dropped is not causing any hydronephrosis but I'm presuming it will need to be removed before any more chemo.