A forum for advanced pancreatic cancer issues

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Linda G
Posts: 108
Joined: Fri Sep 11, 2015 2:06 pm

Re: Totally in awe of my wonderful Husband!

Postby Linda G » Fri Apr 08, 2016 6:31 pm

Hi PW, Good news about the MRI, I bet you were both relieved! Disappointing about the biopsy though. I didn't realise that could happen. Wishing you both well for the next round.
xxxx

Fifi

Re: Totally in awe of my wonderful Husband!

Postby Fifi » Fri Apr 08, 2016 8:00 pm

Hi Proud Wife.

Pleased the MRI was ok, that is a relief.

Completely agree with your husband, get straight on with the chemo. He has wasted too much time waiting for biopsies, and time is not something people with pancreatic cancer have to waste.

Good luck on the abraxane and gemcitibine. Dad was on gemcitibine and tolerated it very very well. Though everyone is different.

Leila xx

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

Re: Totally in awe of my wonderful Husband!

Postby Didge » Sat Apr 09, 2016 11:31 am

Even if they had got a biopsy from the tumour, there can be different cells in different parts of the tumour so it is not always as helpful as it might be. I once was given advice from an eminent oncologist via a third party who said about pancreatic cancer "every day counts!" I really believe that is not taken seriously even by specialist hospitals. A couple of weeks can make an awful lot of difference and whilst it is unavoidable sometimes, as in available dates for surgery (we had to wait an extra week because the surgeon was on holiday) if it is a question of bring appointments and treatment forward, getting scans done etc. I agree with Leila -DON'T WASTE A SINGLE DAY!
xx

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

Re: Totally in awe of my wonderful Husband!

Postby Proud Wife » Sat Apr 09, 2016 11:49 am

Thank you Linda, Leila and Didge.

I totally agree with you about not wasting a single day but my hubby is very strong willed - exceptionally strong willed actually and sometimes I just have to back off. It's really hard because I know how every day counts but he says he trusts his team and I have to respect that. All I can do is plant the seed and leave him to make the decisions, otherwise we'd spend the whole time arguing and causing bad feeling.

When oncologist said spine was okay, we thought meant it the cancer was contained within that one vertebrae. However, we got a copy of the MRI scan a couple of days ago and it shows that the vertebrae collapsed due to osteoporosis and there's no evidence of spinal metastases which is brilliant news. So at the moment, we are dealing with progression in the pancreas and liver mets. We will chase up treatment on Monday, there's no reason why he can't start mid week. Very curious and nervous at the same time as to how he reacts to gem/abraxane. Hubby's not having a good day today, when he says he doesn't feel super, I know he's not well. It seems at the moment he has one good day and then one bad. Currently eating well though and not losing weight so that's good.

We had a visit from our Specialist palliative care nurse yesterday which was good. She's going to come back in the next week or so and see me privately, so that I can talk to her without fear of saying the wrong thing and upsetting my hubby. He doesn't want to talk about cancer at all, whereas I have to be practical and know what helps out there etc for when we will need it.

Again, thank you so much for your support, this forum is amazing. Have a good weekend all xx

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

Re: Totally in awe of my wonderful Husband!

Postby sandraW » Sat Apr 09, 2016 2:27 pm

Hi PW,
Your hubby sound much like Trevor, Trevor's attitude was if you don't believe it, its NOT happening. We had a MacMillan nurse who was brilliant she sussed him out straight away, when she wanted the district nurses to be involved just in case we ever needed them she said to him could she contact them just for my peace of mind, and even though she did call to see us, she use to speak to me regularly on the phone to make sure everything was ok, and if we needed her, which we never did.
Great news about the spine, and hubby's eating Trevor was much the same, and he continued to stay well until the last 6- 8 weeks when there was firstly a slow deterioration, then very rapid at the end.
Your husband is bound to have good and bad days, we all do, but I understand your worry when he is not feeling too well, I was exactly the same, its all ups and downs, its exhausting.
I hope the Gem/Abraxane suits him and that it shrinks the tumours, lots of people do well on it, we
never got the chance to try it. take care love sandrax xx

shelda
Posts: 59
Joined: Thu Feb 04, 2016 11:41 pm

Re: Totally in awe of my wonderful Husband!

Postby shelda » Mon Apr 11, 2016 11:50 pm

Hi PW, been off a while so just been catching up on your updates. When does the gem/abraxane start?? Mum had that to start with its supposed to be pretty well tolerated but it played havoc with mums platelets and magnesium levels!!! Fingers crossed that he does well in this new regime. Thinking of you xxx

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

Re: Totally in awe of my wonderful Husband!

Postby Proud Wife » Tue Apr 12, 2016 7:23 am

Gem/Abraxane due to start on Thursday. I have a really important appointment at 9am today that I cannot miss but hubby been up most of the night with break through back pain which is a first for us. We went out to eat last night, he didn't eat a lot and then came home and complained of not feeling well and being really full. My son is going to sit with him until I get back and go into work later but do I just carry on giving him oramorph and paracetomol when he needs it and wait until Thursday for treatment or should I get him booked on the cancer ward for treatment today/tomorrow? Having had a brilliant last 8-9 months, this is all new to me and I don't know what to do. Do I call my GP? I feel a bit of a fraud because we know what's wrong with him, so what can the doctor tell me, I just don't know how to manage it best? Is he even going to be able to have chemo if he doesn't feel well? Apologies if this is a dumb question, just panicking a little xxx

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

Re: Totally in awe of my wonderful Husband!

Postby Didge » Tue Apr 12, 2016 9:09 am

Whether a person has chemo depends on blood tests rather than how they are feeling although if course if they feel too ill they can decline it and Rob did this a couple of times although he lived a long way from the hospital. As for pain relief if he can get to Thursday the hospital can review it. In the meantime obviously don't overdo the paracetamol. As that can be lethal. Xx

PCUK Nurse Rachel C
Posts: 61
Joined: Wed Jan 14, 2015 4:25 pm

Re: Totally in awe of my wonderful Husband!

Postby PCUK Nurse Rachel C » Tue Apr 12, 2016 3:08 pm

Dear Proud Wife,

I'm really sorry to hear that your hubby is experiencing uncontrolled back pain and that you have been up half the night, so I am sure you are all exhausted!

Unfortunately, it’s not uncommon for patients with pancreatic cancer to experience difficult to manage pain. Often this is because there is a bundle of nerve fibres that sit behind the pancreas, this is called the Coeliac Plexus. This bundle of nerves then ‘transmits’ messages along the nerve pathways, and in this instance they are transmitted to the spinal cord where many of the nerves are based. In many patients with pancreatic cancer, pain (usually back) is a huge component of their ‘pain management’ and this may be due to the increased pressure on the coeliac plexus from the tumour, if this is pushing on the nerves it makes sense that this will cause more pain. I'm not sure if this is the case for your hubby, but could be a possibility?

This type of pain is called ‘neuropathic pain’. We also know that this neuropathic pain does not respond so well to the normal pain relief, ie opiates, however this does respond to medications that belong to the ‘neuropathic group’. It may be that your hubby would benefit from being assessed in relation to starting this type of medication?

Your GP, Specialist Pain Team or Oncologist can prescribe this type of drug but just so that you are aware, that depending on the actual drug that is prescribed, it may take approximately 3-10 days to take full effect. It may also be, that once the Gem/Abraxane starts that this pain will also improve.

Proud Wife, if you would like to discuss this further, then please do not hesitate to call though to the support line (0808 201 0707).

Kindest regards,

Rachel
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: support@pancreaticcancer.org.uk
Support line: 0808 801 0707

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

Re: Totally in awe of my wonderful Husband!

Postby Proud Wife » Tue Apr 12, 2016 3:49 pm

Thank you both Didge and Rachel for your really helpful comments. What you both say makes perfect sense. Although hubby is a one year survivor, it's only now that the disease is progressing so this is all going to be a learning process for me. This forum is so invaluable, I'd be lost without you lovey people so thank you from the bottom of my heart. xxx

Paige
Posts: 34
Joined: Fri Mar 04, 2016 5:21 pm

Re: Totally in awe of my wonderful Husband!

Postby Paige » Wed Apr 13, 2016 12:45 am

Hi PW,
Sorry to hear things have been so difficult for you recently but it is good to hear that the new chemo regime is planned for Thursday. I just wanted to comment on the fullness and feeling of unwell that your husband felt after eating, is this the first time this has happened? My Dad experienced fullness after eating which with time led to him being sick regularly late at night after having this feeling, it turned out he needed a duodenal stent which was easily diagnosed with a barium meal x-ray test, after the stent his appetite improved massively. Of course i am not saying this is the case with your husband as my Dad was having problems with actually being sick regularly late at night but if symptoms continue might be worth mentioning to his consultant.
Best wishes for your husbands new chemo regime, whilst i know everyone is different my Dad did find Gem/Abraxane more tolerable than FOLFIRINOX.
Best wishes,
xx

Fifi

Re: Totally in awe of my wonderful Husband!

Postby Fifi » Fri Apr 15, 2016 8:07 pm

Hi PW,

How did your husband get on with the chemo yesterday?

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 » Sat Apr 16, 2016 7:54 pm

First of all, thank you ever so much Rachel. I think you are spot on. Hubby only really gets pain at night and when in bed, which I think is probably the pancreatic tumour pushing on nerves - this is how he was at diagnosis. I gave him 2 x 10 ml of oral morphine spaced an hour apart last night and that was on top of his 60ml MST and it didn't do anything, so shall will have a chat with doctor on Monday. For the rest, he now seems to have perked up now which is great.

Paige, thank you also very much for the good advice, I will keep a close eye on him, not that he's going to like that!! This has been building for a while now but tonight, for the first time in a long while, he managed a good plate of food which is encouraging, although he's back on metoclopramide which helped him last time.

Hi Leila how are you? It's not long to go now and I hope you are not stressing too much? Any further thoughts as to what you are going to do? Chemo was okay thank you although once home, he pretty much slept for 24 hours on and off but by 2pm yesterday he was wide awake and back to normal! Today, he's got a really sore mouth, both inside and the corners but certainly not complaining if gem/abraxane does what is says on the tin! His weak spot I suppose when having chemo is the affect it has on his skin. One touch and it breaks.

Vaseline is working wonders on the cracks at the corner of his mouth but not sure what he can do if anything to sooth the inside of his mouth?

Have a good weekend all xx

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

Re: Totally in awe of my wonderful Husband!

Postby MSH » Sun Apr 17, 2016 2:00 am

Candidiasis or thrush is common especially with chemo. It can be easily checked for by a simple mouth swab that is if it's not clinically obvious.

https://en.wikipedia.org/wiki/Oral_candidiasis

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

Re: Totally in awe of my wonderful Husband!

Postby sandraW » Sun Apr 17, 2016 12:39 pm

Hi PW,
Trevor suffered with this too but only with the first treatment, of each round of chemo, if that makes sense. He was given a mouth wash/ medication (I think it was called Nystatin?)which he said was awful, so he just suffered but not in silence may I add. We used a good quality non perfume lip salve which did help, much like the Vaseline you are using but luckily it cleared up quite quickly. He didn't have any more bother until he started the next lot of chemo, but I remember one of the young men we used to chat with regularly who suffer with a sore mouth all the time he said that the medication was worse than the sore mouth was too.
I hope he feels better soon, love sandrax xx