Totally in awe of my wonderful Husband!

[shelda]

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]

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]

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]

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]

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]

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

[Guest]

Hi PW,

How did your husband get on with the chemo yesterday?

Leila xx

[Proud Wife]

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]

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]

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

[Proud Wife]

Mark, a very big thank you, I took one look in hubby's mouth and one phone call later to 111 and a prescription for Nystan has been faxed to local tesco pharmacy. I'm feeling really stupid today. He suffered exactly the same throughout 12 cycles of folfirinox - we just thought it was a side effect of the treatment.

I won't say anything to hubby Sandra about the delightful taste (I'm assuming that's what makes the medication worse than the soreness) but we will soon find out as I'm about to head out and pick up the prescription. If the side effects are bad, then I won't feel so bad for not picking up on this earlier!

Hubby has been fast asleep again all day. Woke up at about 11.30 has sat in his chair but can't stay awake. We were warned that fatigue was a side effect of gem/abraxane which he didn've have previously. I suppose sleeping is good for him and helps the body cope with the toxins of chemo? Makes me really sad to see if I'm honest. He's always been such a loud, cheerful bubbly,energetic man, this is the first time in our 23 years together that I've seen him in this way.

On a more positive note, I hope the sun is shining where you all are, it's lovely here. xx

[Guest]

Dad used Difflam oral rinse, but that was for sores, it worked very well. Obviously the GP didn't know about it but luckily the Oncologist did and was prescribed.

Leila xx

[Proud Wife]

Took one whiff of the stuff and thought oh no but hubby said he quite liked the taste!!!

Also bought some Difflam for medicine cupboard (which is getting fuller and fuller by the day) in case of sores so thanks for that tip Leila. How are you? I am conscious that you only have a few days to go and just wanted to check that all was okay? xx

[Linda G]

The Nystan worked very quickly for Stewart, a couple of days max, he quite liked the taste as well. Hope you are taking care of yourself too.

xxx

[PCUK Nurse Dianne]

Thank you all for the input about the oral thrush (candida). It is worth noting also that for many patients that this may also affect the area at the back of their throat, not just the mouth, especially if it has been untreated for a while, and many patients may complain of the sore throat in the first instance, so if this is a new symptom, always worth considering if there is any evidence of oral thrush.

PW I note you mentioned your husband's fatigue, and we do know that this is a very common symptom for patient's with pancreatic cancer, and of course may also be related to the chemotherapy. There is a lot of information about fatigue management now as this is such a common symptom, and some of this gives thought to planning a routine for the week around any appointments so that the patient is not doing a lot of activities on the one day. Also, conversely to what many people may think, gentle regular exercise is proven to be beneficial from many perspectives. I am sure this sounds the opposite of what you may all be thinking, however it is also about trying to maintain patient's fitness; gentle exercise is good for maintaining muscle strength,helps to keep bowels active and also a sense of time and everyday awareness (especially with this time of year and spring blossoms). Being out of the house for a short time (especially as the weather improves) is also good pyschologically.

We are always happy to speak about this with you individually if that helps, as we do appreciate each patient will be different.

Hope that helps.

Dianne

Pancreatic Cancer Specialist Nurse

Pancreatic Cancer UK

Support phone: 0808 801 0707

Email: Support@pancreaticcancer.org.uk

[Dandygal76]

Proud Wife, I hope you have this all sorted now. I put on 2 lottery tickets with a mind I would take a few of us on here out of dodge and to the best place in the world for this. Not one number though, I will try again Friday. We have had our share of bad luck... you never know! I keep reading what you guys are all doing, it is only tonight I found some space for myself to respond with my very limited knowledge and experience. I can only send you my support and love. x

[shelda]

Hi PW, how is everything going with the new chemo?? Mum suffered terrible with thrush and hers also coincided with high blood sugars as well!!! So many horrible side effects it's just unfair. Love to you both xx

[Proud Wife]

Hi Shelda

Hmmm, ask me that tomorrow please! Back to what he calls the pump station for more lovely chemicals tomorrow morning.

I am beginning to think this regime is far tougher than folfirinox but time will tell. His back pain has disappeared though so I'm hoping that's a good sign. Oral thrush resolved with grateful thanks to Mark or I'd never have known.

However, appetite appalling and he's pretty much living on Ensure, water melon and fresh juices that I'm making for him by the bucket load, he seems to be enjoying something fresh and juicy. I'm also making fruit compotes with strawberries, raspberries and blackberries and then liquidising with live natural yogurt and sugar which is going down a treat. Drinking seems easier than eating. He's not short on vitamins but I'm not happy about the weight loss. Previously, Dexamethasone and metoclopramide were life savers and gave him a hearty appetite, now they are doing absolutely nothing. One thing I won't do though is hassle him to eat because I know that if he could eat, he would and that would only put him under pressure.

Really not looking forward to tomorrow but it needs to be done.

Dandygal, thank you so much for lovely kind words of support, they means so much and I feel very humbled as you have got it far worse that I have at present and probably don't get 2 seconds to yourself. It really sucks doesn't it! All the best to you and yours

love PW xxx

[Proud Wife]

Hi Dianne

I wanted to post separately just to say thank you so much to you and your team for the continued support and expert knowledge/advice you are constantly giving. I am truly grateful xxx

[Dandygal76]

a

Edited July 2, 2016 by Dandygal76

[Dandygal76]

Hey PW, I just wanted to quickly say the Emend seems to be working for my dad after all our issues so have you tried that? I am just off to work and have not had time to go back over your thread and check. I had to ask for it (I think because it is so expensive). Dad is also on a steroid (I will find the name) and today (day after chemo) he is so so much better than last week. It is a relief. We are going to get the Lorazapam that the PC nurses suggested as well so just keep going back until they find the answer. x

[Guest]

Hi PW,

Really hope chemo goes ok today for your husband.

Leila xx

[Proud Wife]

Thanks Leila, so far so good although his hemoglobin was on the low side so he's booked in for a blood transfusion tomorrow which the nurses said should help with the fatigue.

I'd put your money on thunderball though, you have more chance of winning than on lotto since they added the extra 10 numbers! What an amazingly kind generous gesture - you never know your luck! Would love to share tips with you in order to get them eating. The best of luck for Sunday xx

[Dandygal76]

Hi PW, I will post the numbers tonight before the draw - I will get one from each, we need a big win for this! Also, your hubby is already on the steroid dad has. He went down a bit yesterday afternoon (day after chemo) but no where near as bad as last week and this morning he text me and said he feels great and wanted to do some tiling in my bathroom (I said perhaps he should go fishing instead! Haha - no tiling!). Anyway, it appears Emend may have turned this around for him in a huge way - just in case you want to try it, it is such a relief (and post chemo day 2 which is normally the worst day!). We have also got the lorazapam which he will take to stop the anticipatory sickness that will build up before next chemo. I will say to you that my research has stated that 10% get anticipatory sickness on this chemo routine and there was a study that said by taking it at the start whether you will get it or not is the best route because it is harder to control once you have it, so that may also be a consideration because I wish we had. It is a very mild medication. How is your Hubby today? It is always such a worry to see how they will react and I can imagine this is worse on new routine. x

[Guest]

Hi PW,

Pleased chemo went well for him. Hope he is feeling ok today? I agree with you that you can't force him to eat, it isn't that he doesn't want to, he just can't. But you are doing so well to accommodate what he can eat, and that will make him feel good and not under any pressure, like you say. Hopefully his appetite will pick up, and he will ask for more substance foods.

You are doing a great job PW.

Leila xx