A bit of a worry....

[Cathy]

Thank you guys.

Steve - great you are enjoying your holiday. Weather here today (where I am anyway) is awful you may be pleased to hear so relax and enjoy!!

Karen, I think you will have gone by the time we get back so have a great time on your holiday too. I AM flying Easyjet - as long as they don't insist I go into the hold I'll be ok I think The plane will probably match my spray tan at least - I DO like to be colour coordinated LOL. I think Steve is in Spain as well?

xxxxx

[Slewis7313]

Thanks... We are in Costa Brava (L'Escala) near the French border. I wish I had brought a Maxi dress with me though!

Steve

Xx

[Cathy]

LOL!!!!

I'm sure you'd look a picture too!!!

Have fun out there....

xxx

[PCUK Nurse Jeni]

Oh Steve! That did make me laugh!

Maxi dress indeed!

You might be mistaken for a Tongan!!

Jeni.

[J_T]

Bon Voyage everyone!

Hope you had a good birthday Steve.

x

[Cathy]

Haven't posted on this thread for a while and was in 2 minds about whether to at all as this could just be me worrying unecessarily.

Jonathan is on a treatment break still and due to have a "monitoring" scan next Tues. He's just been told to keep an eye out for symptoms in the meantime and get in touch if anything came up that was symptomatic. By and large he has been great and we've been out and about and done loads. He's even been able to stop taking insulin. Last week (on my birthday as it happened) he casually mentioned that his tummy was a bit tender after eating anything. His first CT scan had shown some "furry" bits (cancer) in his abdomen. It only happens immediately after eating and he is going to the loo as normal and everything looks normal when he does (he tells me). He wasn't/isn't worried about this and has said he didn't want to ring up the oncologist about it (as he thinks it isn't related) and told me he didn't want me to either. Anyway, I did and spoke to the secretary who couldn't help as the oncologist would really need to talk to Jonathan about his symptoms.

I expect that as he has a scan next week and follow up appointment booked that all he would be told was that he should just turn up for those as normal. He's certainly not suffering and is drinking and eating normally (he wants a curry on Saturday night) so I'm trying not to fret.

I saw a post a little while back by Dianne from support who said that a lack of enzyme can cause stomach cramps and I wondered if that is what this could be. He hasn't (to date) taken anything like creon as it's not been needed so I wonder..

Has anyone else had a similar experience?

Cathy

[PCUK Nurse Dianne]

Hi Cathy,

Like you I hesitate to post, as this forum is about sharing your experiences, and I certainly welcome those of you with answers to post a response to Cathy. As you had mentioned the previous post, I just thought I would pop in a quick answer.

As you mention, stomach cramps can occur in patients with PC. Often one of the indicators that patients need a pancreatic enzyme replacement (Creon or similar) can be the bloating and discomfort that occurs post meals. This may be associated with offensive wind and in some patients urgency for the toilet, and this is due to the fact that the food just eaten is not being metabolized properly and tends to hurry through the digestive tract. Often the stools may be normal looking, it can be the particularly fatty meals that will cause more problems with stools that are difficult to flush, and more offensive. I would keep an eye on it, maybe it is just this. I also wondered if Jontathon is taking something that helps curtail the stomach acids, and any reflux, ie medications called PPIs for short (Proton pump inhibitors) and include Omeprazole, Lansoprazole. These are usually given to patients who are exposed to stressful situations, have some abdominal 'state' happening, may be taking steroids, and those on creon as well. This helps protect the stomach from the highly acidic secretions and with Creon they prevent the creon being broken down too quickly by the stomach acids.

Hope this is helpful and does not negate any comments or experiences that any members of the forum family may have had.

Regards,

Dianne

Support Team

[marie souter]

Hi Cathy,

My mom's major symptom for the past year before diagnosis was the tummy pain which went round to the back on the right side. She ended up with a blocked bile duct. Our alarm bells rangs when she went yellow. She was admitted and they found the pancreatic cancer and a stent was fitted to open the bile duct. We have had no re-occurrence of the blockage since, but she still gets the painful tummy after eating.

She takes Creon. I have noticed a pattern emerging when she feels particularly nauseaus. It seems to be followed by a HUGE bowel movement which is initially a very large painful movement. Then, once the blockage is gone, this is followed in the next day or two by what I call her 'snakes' - masses of waste comes away in long snakes (only way I can describe it sorry). She seems to get awfully backed up for someone who eats so little and this seems to be when she doesn't take enough creon. The body just doesn't break down the food properly and it literally seems to skip digestion and just sits in her bowels. So the swelling of the bowels pushing up towards the pancreas, along with the tumour in her pancreas pushing down on her tummy, is causing these awful 'colic' like pains. There is something the doc gives my mom at these times. Shes currently on Levomapromazine (nonzinan) for the almost constant nausea this causes, and Buscopan for the colic pains. It really does help. I would say just keep an eye on things. I don't know how willing Jonathan is to discuss his bowel movements with you but I hope this helps. xxx

[J_T]

Hi Cathy, sorry to hear you are worrying about Jonathan, I think we worry more than they do!

His scan is close and no doubt that will put your mind at rest. Very best of luck with the results.

Enjoy the curry! (yak!)

Julia x

[Cathy]

Hi all

Thank you for your replies. My mind is put at rest a little as it does sound like it's the lack of enzymes that are the problem as he told me last night that also when he eats, he feels the need to go to the loo immediately after. I'm still worrying that as he hasn't had this problem before it might mean something more ominous is happening... Waiting for scan results is grim!

Julia - you are right, I don't think he is worrying much at all. When I said to him earlier that I'd rung his oncologist's secretary to get him to ring back, Jonathan couldn't remember initially why. (Tssk..! Honestly!!!!!!)

Diane - Jonathan has been on lansoprazole for a LONG time. He used to get bad acid reflux and the lansoprazole sorted that out just great so pleased to hear that helps with any future creon.

Maria - your poor Mum - you've really had your hands full. Really pleased that the GP has prescribed something for her that helps with her nausea and colic.

All the best for the weekend everyone...!

Cathy xx

[marie souter]

Hi Cathy,

Yeah its hard times as I'm sure you know .. Have you ahd any scan results back yet?

xx

[Cathy]

Hi Marie

Thank you for asking. We don't get them til the 16th so we've a bit of a wait

How's your Mum doing?

Cathy xx

[Cathy]

Morning all!

Such sad news we've had recently I almost didn't post this but there were just a couple of things.

Firstly I was wondering if anyone had experience of constipation with PC? Jonathan had a little bit during his 2nd cycle of FOLFIRONOX but nothing since until recently. He is not on treatment at the moment. He started to have tummy cramps when eating about a month ago and started experimenting with creon which seems to have resolved that but has been a bit bunged up. We've discussed this with his Onc, Gp and Community Palliative Care nurse and he is now using laxido (3 sachets a day) and senacot which is helping a little but has discomfort in his tummy, back and shoulder (his osteopath has told him his shoulder pain is a result of this - surprised me but there you go). I have to nag him to take any pain killers at all but massage helps. Anyone experience of anything similar?

T'other thing is that I might be a bit quiet on here for a few days. Last December, in a rush of blood to our heads, we booked some cheap flights for some October sunshine in Crete. 6 days later Jonathan had his diagnosis of advanced PC. The idea of him even being with me, let alone a holiday in October seemed very dim. Anyhow, after his scan results earlier this month there has been a flurry of activity Chez Us and we have booked accommodation and, thanks to Bee's heads up, travel insurance (with Insurance With - £87.50, a bl**dy bargain!!) and, armed with a hefty amount of laxatives, we're off!

Am going to try seek out some wifi when we get there so can see anyone has any advice they can offer re being bunged up and also I know there are results due for a few of you (Bee? Sarah? Emma?) Will have my fingers crossed for you all.

Stay well everyone!!

Cathay xxx

[Bee]

Hi Cathy,

Glad to hear you have managed to escape for some autumn sunshine. Max strength senna does the trick in this house, and helps keep constipation at bay, but his bowel habits change so often it's hard to keep track off. If he doesnt take enough Creon he also feels bloated and uncomfortable. its a vicious cycle sometimes, sore tummy= more painkillers= more constipation and so it goes on! Perhaps some lovely fresh Cretian fruit and vegetables will help Jonathan.

Glad you got reasonable travel insurance, it's nice to know a company isn't trying to rip us all off!! Have a wonderful time and enjoy the sun, weather forecast has just said rain for us!

Results looming but am trying to block the whole thing out until its unavoidable!!

Bee xx

[J_T]

Have a fab time Cathy and Jonathan. Don't get too drunk!

[InfoForMum]

Bon voyage m'dear. Indulge, relax and enjoy!

Sarah

[karen17]

Wishing you a wonderful holiday Cathy and Jonathon - enjoy the sunshine, rest, relaxation and more importantly the vino!

Bee - fingers crossed for your results

xxx

[Jwilson]

Cathy. Sorry to contact you on holiday to talk shit.....sorry couldn't help it. What you need is a thing called strong co danthramer . You can get co danthramer but also one named strong. Go through you like a road......that's a quote from the grandma on the Royle family! Can't believe you are getting away. Have a ball

June W

[Cathy]

Hallo forum friends and kalispera from Crete. Having a relaxing time eating and drinking loads. Julia, I am afraid I have ignored your advice... more than errrrr once or twice ahem.

Thank you all for your lovely replies. Thanks June for your sh*t one (lol).

Karen, I really hope you and the family are doing ok. I've been thinking of you and Julia, thinking of you, Ray and Kate as well. Bee, I assume no scan results yet?

Well, Jonathan fancied watching a bit of footie and as the weather is a bit chilly today I have sourced some wifi and taken the opportunity to catch up with all your posts. Wow it's been busy!

Some good news from Steve and Sarah and very sad from Nia. Lots of new members of the forum family as well. Just to say I have read all your posts and wish you welcome. As you probably already know, this is a fantastic place to come for advice, reassurance and support. My partner was diagnosed with advanced PC last December. This was his introduction... http://forum.pancreaticcancer.org.uk/viewtopic.php?f=3&t=1017.

Keep well everyone and wish you were all here..

Cathy xxx

[J_T]

Wish I was there too, leading you to the path of righteousness and making you a nice cup of tea

Glad you are both having a fab time, enjoy!

Julia x

[belgrade]

Hello Cathy,

Hope you are having a wonderful time. Dave and I regarded crete as our second home and had booked our holiday for the end of september. Sadly, Dave passed away on 10th. September but I have re-booked with my daughter and grand-daughter for October half-term. Careful with the raki!!!

Hilary x x

[Cathy]

Haven’t updated this post for a little while but thought I would to see if anyone has any thoughts.

Brief recap, Jonathan, my partner diagnosed with stage iv PC last Christmas – has had 8 cycles of folfironox this year which he tolerated well and resulted in tumour markers being reduced by almost 98% and stabilised the disease. He has been incredibly well, no pain killers for months (well, til recently) and we have had loads of weekends away, meals out etc. He hasn’t lost any weight and looks really well (still does). He isn’t on treatment at the moment but being monitored

Despite recent good scan results and very recent blood test results he has started to suffer from stomach pains which are getting more severe as time has gone on, has constipation and a need to wee frequently (both bother him especially at night). This is affecting his quality of life and he is spending a lot of time in bed trying to catch up on missed sleep.

These started mid August and the symptoms were very similar to others who need creons. So he started creons late Aug at a low level. Creons stopped the sore tummy immediately after eating however…

…by early September he had started to feel constipated and complained of a pain in his shoulder (we have been told is a referred pain).

Mid Sept CT scan and Onc appointment. Scan and blood test results very good (reduction in abdomen & liver mets although pancreas tumour is unchanged). Discussed ongoing stomach complaint with Onc who wasn’t sure what the cause could be looking at the scan but would organise a faecal elastace test.

Paliative care nurse suggested senakot and laxido sachets if senacot doesn’t work (it didn’t). He stopped the senacot as we weren’t sure that this wasn’t making his abdomen pains worse.

Early Oct - 12 days in Crete – and went armed with laxido. He struggled with weeing and there was one occasion when he couldn’t go at all. Up and down with feeling blocked up – on a large dose of laxido – 6 sachets a day. It seems the blockage (if there is one) is at the very base of his colon.

GP apt once back. GP flummoxed and suggests talking to the Oncs. Prescribes codeine and more morphine and a stool softener (ducosate). External abdominal check flags up nothing of concern. His appetite is still very good but eats smaller portions due to these issues.

GP organises x-ray of abdomen.

28 Oct - Onc appointment. Blood test results still very good (in the normal range). Onc does physical examination of abdomen and prostate – finds prostate enlarged and says that in her view, this was the likely culprit. CT scan not suggested as the last was so recent. Pre creon faecal elastase test 185.

Organised blood test for PSA levels and ultrasound scan.

GP apt 5 Nov. Jonathan is still having a lot of pain (I have discovered he has come off codeine as he said they made no difference and he was worried about causing constipation). The only pain killer he is on now is oramorph (can’t say in what quantities as he sips directly from the bottle – I have said before that he is a law unto himself in these matters). GP still flummoxed and isn’t convinced by the Onc diagnosis however prescribes Finasteride to reduce the prostrate. I discovered, to my dismay afterwards that this can take up to 6 months to work.

Discussed pain management again with palliative care nurse – suggests 1 or 2 teaspoons of oramorph every 4 hours and we will discuss another, better, drug when she visits Fri (tomorrow).

The pain is in his right shoulder and the base of his abdomen and lower back tho last night he was complaining it was in the middle of his back. The pain can be alleviated to a large extent by a back massage to the point of being pain free for a while.

X-ray results have now come back showing no blockage.

Next Onc appointment is 11 Nov (Monday).

It’s so infuriating as when it subsides he feels great – can run for busses and enjoy eating and drinking.

Sorry if this all sounds a bit rambling (and a bit LONG). But if anyone is familiar with these symptoms I’m be interested to hear. He was in tears last night and I feel so helpless not knowing where to turn really – the palliative care nurse thinks it’s all a result of the creons and the pancreas, the oncologist possibly his prostate and the GP not sure at all.

Thanks for reading this far….

Hope everyone else is doing ok

Cathy xx

[davidandsam]

Hi Cathy

Thanks for the update and I am sorry to hear that the boy is suffering.

Just a long shot but is he having Neulasta injections on a regular basis (every 21 days for me) as I have horrible on off relationship with the bloo*y stuff which includes side effects such as a massive pain in the shoulder and sometimes lower back which is difficult to shift with normal painkillers once it's set in. This is also coupled with frequent constipation (nothing worse than Chemo constipation) which only lasts for a few days and an increased need to pee especially at night which does wonders for the sleep pattern!

It creates frequent bouts of me punching the pillows in frustration. I manage it beacuse I have no other choice, I need the boost in my immune system to keep the Chemo pace where I want it but it is by far the biggest side effect I have to endure.

Maybe it's a stab in the dark but I thought it worth a mention.

I hope Jonathan gets back to his previous level of fitness quickly!

All the best to you both

David

[KATB]

Oh Cathy, I have no idea and can't offer any advice but didn't want to not post. I think of you and Jonathan all the time.

If I were you and I was stuck, I'd ring Jeni or Dianne and ask for advice. They are so knowledgeable and have supported so many patients and carers that surely they have come across this before.

Keep on keeping on lovely, you're doing a grand job

xxx

[J_T]

Cathy, ditto to what david and Kate have said.

My main priority with Ray was making sure he had no pain. Our GP and Mac nurse were brilliant at keeping this under control. I know Jonathan is resistant to taking meds, Ray was, but maybe he should start looking at starting on slow release morphine tablets at a dose recommended by your medics. Jonathan has done brilliantly to go without pain killers for so long but if he needs them, he needs them and it doesn't stop the men/women in white coats sorting out what the actual problem is and then maybe he can ditch them again.

Here's hoping.

Much love

Julia xxx

PS obviously that is just my own thoughts, I am no expert and may be talking out of my hat!