A bit of a worry....

[EmmaR]

Cathy ,

This bloody P C if it's not one thing it's another , Jon is in hospital with what the consultant said was rather a large clot on his chest he is still on oxygen so I hope the Claxene injections work quickly to disperse it , Jon has complained of pain in shoulder often and in his back what helps the back pain with him is a hot water bottle two in fact one on back and one on tummy, but as he has lost so much weight he is very boney so everything hurts ,just hope it does not spread anywhere else , sorry for going on about Jon's woes when it 's Jonathan who is your worry hope he gets sorted soon .

EmmaR xx

[Bee]

Hi Cathy,

Isn't this just such a roller coaster.

Pain control is the main culprit in our house (now that the stent has been replaced!)

Chris has had ongoing problems with lower abdo pain and we had put a lot of it down to constipation , secondary to oramorph and slow release morphine tablets. His pain does move though and can be in his back or left side. The feeling now is that the pain is neuropathic (nerve pain) , caused either by nerve damage from chemo but probably the tumour pressing on the.nerves near the pancreas. He has been started on gabapentin which is used alongside opiates for nerve pain. And although the dose is still being juggled it does appear to be having some effect and on some days oramorph use has reduced. This is in addition to slow release morphine tablets. Not sure if that's any use to you but thought I would share.

As you say it's so frustrating as, like jonathen , when pain free chris is his usual self. Awful to see aswell as it makes you feel so helpless doesn't it?

Fingers crossed you get some solutions from the palliative care nurse tomorrow.

Take care

Bee xx

[InfoForMum]

Hi Cathy, as for Kate I haven't got anything practical to add so will keep it short. Thinking of you and the deep, deep frustration to have no root cause found for this kind of thing. I remember facing down a consultant when Mum was admitted with pancreatitis. He looked to be edging to discharge with pain relief and I stood toe to toe and said she was going nowhere until root cause was found. In her case her Amylase levels indicated pancreatitis (funnily enough with similar pain - right shoulder radiating from upper abdomen plus lower abdomen when it got severe - nothing touched it except oramorph, but then constipation set in).

Just a thought there (after saying this would be short). Pancreatitis treatment is often fluids only for 3-4 days with input/output monitored. Nil by mouth with IV nutrition if needed. Could this be tried to take pressure off his digestive system just in case it is an iritated pancreas at fault? In Mum's case she also had IV antibiotics as it looked like an infection may be rumbling around. Her bout had a defined cause (a rough biopsy with 7 samples taken to get enough for a diagnosis), but the tumour plus chemo can also cause it. That is absolutely a medical call, so would discuss with the nurses. Don't want to hurt more than help by coming up with wrong ideas.

Take care hon and let us know how you and Jonathan get on.

Sarah

XXX

[Cathy]

Hello all you lovely people,

Thank you so much for all your replies, everyone of you. X

His nurse has left us now and while she was here rung the GP for a prescription and then the chemist to make sure it was in. He had a really bad night last night and this morning so her visiting was timely as she could see exactly how bad he was. He has been prescribed oxycontin for mornng and night and then oxynorm for breakthrough pain so we shall see how we get on with that.

I haven't seen him as bad as he was last night and allowed myself a little cry in the shower this morning.

Your messages all helped and I read them out to Jonathan as well after his nurse had gone and he was deeply touched as well. It really does help.

Kate - I emailed Jeni and she has replied very comprehensively as always a little earlier. She suggested it may be that he might have nerve pain, caused by problems with the coeliac plexus nerve bundle and need GABAPENTIN or PREGABALIN - like Bee's hubby Chris.

Bee - your Chris's symptoms do sound very familiar to Jonathan's. We have the Onc appointment on Monday so I will go armed with the name of those drugs and a suggestion that they consider that this may be the issue.

Just as an aside - what Jonathan finds most frustrating is that he feels that there is no one person in charge of his care and taking things forward for him. I think in his case this would be the oncologists but they are so distant, i.e. no contact at all between appointments, that we rely so much on people who are. Which in a way brings me back to you all and the nurses here.

So, it's Friday.. In theory we were meant to be away (at the seaside) this weekend so I may be off line and, if so, hope you all have a lovely weekend. If we go I'll bring you all back some virtual fresh air and sticks of rock.

Loads of love

Cathy xx

[J_T]

Hi Cathy, very relieved to hear Jonathan has got some pain medication - make sure he takes them!

This

"Just as an aside - what Jonathan finds most frustrating is that he feels that there is no one person in charge of his care and taking things forward for him. I think in his case this would be the oncologists but they are so distant, i.e. no contact at all between appointments, that we rely so much on people who are. Which in a way brings me back to you all and the nurses here."

Bloody hell, I could have written that. As I have said many times, local people - fantastic - the 'Multi disciplinary team'? Well, WHO ARE THEY????????????? or were they in my case!

Love to you both, have a good weekend.

Julia x

[Cathy]

Hi Julia

Thank you. He has a bit of a habit of going "off piste" with the drugs prescribed (and it's difficult me being at work to keep an eye on) but his nurse has stressed and stressed to him again this morning how important it is for him to keep track of what he is taking so they can adjust meds appropriately. I think he gets it... (hope he gets it).

Staying at "yam" tonight and if he has a better night hopefully off to the seaside tomorrow now.

Hope you have a good weekend too.

Cathy xxx

[Jwilson]

Oh bless my soul. Make a spread sheet of the drugs. Buy one of those little boxes where the days of the week are stamped on and put all the drugs in. Bill could no more sort that all out than fly to the moon. Ok. OxyContin what dosage? You can go up and up. Bill now on 100 mg night and morning with 30mg oxynorm for breakthrough pain. Keep with two paracetamol on the dot of every four hours. The hospice nurse told us it works well with OxyContin. You can take paracetamol alongside all of the morphine based stuff. Tell you what......you live and learn. Bill in powered hospital bed in living room and I sleep on the sofa as he hates being alone. Commode beside the bed as his legs buckled under him when a nurse was here. Hey presto, one call and commode arrived not a moment too soon.

Oh......lyrica is good for nerve pain. You take it twice a day. Hope this stuff about drugs helps someone. Constipation, we now find that sipping two glasses of movacol during the day is better than the violent strong co danthramer . Not to mention the smell of the poo does not make you gag.

Could you ring and say ......it's eleven, take A B or C?

Bill is maybe sicker but he could not manage his drugs any more. One month ago yes, not now. He is so tired and muddled up.

June

[J_T]

Hi June, Ray had all those, cept when he had the driver, they changed the morphine to diamorphine, something to do with making more room in the driver for medazolam (sp?) he was on equivalent of 140mg, seemed to work.

Hope you had an uneventful night!

Cathy, have a glass of wine tonight, in fact use the bucket you've no doubt packed for the seaside

Much love ladies x

[EmmaR]

Hi girls ,

What are our men like ! Jon in hospital with a clot which I hope is dispersing with Claxene , after visiting tonight just got home and he rings my mobile to tell me that the nurse wanted to give an haloperidol tablet for night sickness but he doesn't feel sick and we stopped them two weeks ago because he was hallucinating on them the nurse said take a tablet to make you feel less agitated ! He said no wait till my pharmacist comes in tomorrow ( that's me lol ) she knows what I take , OMG ! Report all this to our daughter who for one night only this week didn't visit she as come in twice a day with me all this week so as her brother as just finished his week of afternoon shifts he told her have a break , anyway she said I did think dad was a bit agitated last night ! he is struggling to come off the oxygen and keeps saying he will need it when he comes home! But the plan is to wean him off it over the weekend oh what a mess I feel we are in but so do want him home where I can look after him . Sorry for the ramblings it must be the second glass of wine I have had but just feeling so helpless over the whole situation and tomorrow Wales take on South Africa at rugby and we so enjoy watching the games together but I am not sure he really as the interest to watch it in ward of people who are sick with respiratory conditions but not dying like Jon there I have said it arrrrh

Thanks for reading and listen .

EmmaR x

[KATB]

And where the hell was the HPB Specialist Nurse mum? We found out her name by ringing Macmillan who chased it up for us. However we NEVER saw her and hardly heard from her. What a total waste of space she was! Thank the sweet Lord for Macmillian, District Nurses and Jeni (for my part). Could not have got through it without all of them.

x

[J_T]

Hi Cathy, Saw your post on another thread about you getting scan results today! Hope its another good outcome for Jonathan.

Keep us informed.

Everything crossed!

Love

Julia x

[Cathy]

Hi Julia

Thank you!!!

It would be fair to say I am feeling really apprehensive (in a bit of a "ten and eight" as they say down here). Jonathan STILL having difficulties - Oncologist thinks as a result of all his pills (even she was shocked at the number and remarked he must rattle) so theoretically this is just to rule things out, or at least anything ominous out. Of course, we are taking nothing for granted. It's the not knowing that is worst....

I'll let you know how we get on.

Cathy xx

[cestrian]

Hi Cathy

Really hope that Jonathan's scan results are reassuring and that someone can review all his medications to maybe reduce the number of tablets he is having to take. it really does need one clinician to take charge.

I am so so grateful that I now only take my 4 trial pills every day, one omeprazole and my creons ad lib of course!! Thank the Lord for my nerve separation op to kill the pain I was having as this has eliminated all need for pain killers.

I see my Professor tomorrow for outcome from last week's scans and tests so will find out what if any effect the last two cycles of chemo have had on my tumours - fingers crossed but I guess I'll be happy if they have stayed stable and delighted if by some chance they have reduced a little. As long as I continue to feel as well as I do now then I can continue with the trial indefinitely - just depends who gets fed up first me or them!!

Love and Peace

Mike

[Cathy]

Hi Julia and Mike

Thank you for posting.

Not great news from ours.. basically the b*gger has grown a little so Jonathan is going to have some more chemo starting next Thurs. This is why he has been having pain as she says that one (at least) of the nodules on his tummy has grown a little.

Obviously we were disappointed but it wasn’t a huge shock. We always knew that it would eventually come back - he's not had any treatment (folfironox) since June and the tactic was to monitor him and restart treatment if it did come back. The oncologist actually said that had Jonathan not been in pain she wouldn’t even suggest treatment for it yet (which was a little reassuring in that she isn’t so worried about it – the treatment is to manage his symptoms). Also it is good that it hadn’t spread.

Initially the oncologist suggested just gemcitabine. I enquired about the use of GemCap in the hospital. The oncologist said it isn't normally given as a second line but thought about it for a while and decided that we would do that instead as Jonathan (apart from his tummy) is still feeling well and fit and is a good weight and we could just drop Capecitabine if he the side effects got too much.

So me and Jonathan have chatted about it (and again this morning). He feels a lot better about restarting again now as he knows that the side effects won’t be as bad as last time and he says it just feels like a hill to climb rather than a mountain. Just hope it does zap it and he starts to feel better.

So, we are very disappointed and a bit scared but not too shocked and look forward to (hopefully) blasting the b*gger again.

Mike. I really hope all goes well for your scan today. I tried to reply yesterday afternoon to say so but it wouldn't let me post a reply then I had to shoot off to see our oncologist. Post and let us know.

Cathy xxx

[cestrian]

Hi Cathy

Well we can cry in each other's beer as although the scans showed everything else was fine and main tumour hadn't grown at all I have been kicked off my clinical trial as one small lesion on my lung had grown by more than 20% from 1cm to 1.4cm - Damn it!!

Not feeling too worried as I'll continue with weekly Gemcitabine but no more trial tablets. I've been convinced by lack of side effects that I've only been on the placebo anyway so will only really miss the intensified monitoring the trial has involved. I'm still confident that the hospital will continue to offer an excellent level of care and of course have great support from my GP as well. While I'm feeling so well I intend to enjoy Lanzarote next week and then get stuck in to make sure I stay as well as possible!

I do hope that you settle on the most effective chemo for Jonathan as I am sure this is fundamental to coping with the illness. I will continue with Gemcetabine for now but like Jonathan can now consider other options with the specialists as no longer tied into those dictated by the trial. Good luck and I hope you find yourselves skiing downhill rather than struggling up hill!!

Love and Peace

Mike

[Bee]

Hi ,

Have been trying to post for days and the site hasn't let me on until day, so frustrating to read posts and not be able to respond!

Cathy, I am sorry the scan wasn't fab, fingers crossed a bit more zapping will get in back under control, as you say at least it hasn't spread. Chris had four cycles of fe cap and all tolerated really well. Gemcitabine is quite a quick infusion so no too long spent in the chemo suite. He always slep for a coupl of hours immediately after treatment and developed a rash which was quickly sorted with piriton, other than that he was fine. Capcetabine tablets were also ok, so fingers crossed Jonathen will be the same. Have you got your start date yet?? Also hope pain control is better, you said pain sounded similar before and docs think pain here is also caused by pressure of enlarged lymph node.

Mike, have a fantastic holiday and enjoy some warm weather, no chance of that here. Sorry to hear you have been dumped from the trial, this blasted PC is a sneaky vermin, glad you are not too worried and keeping positive.

Take care

Bee xx

[J_T]

Hi Cathy, as you know we've talked about this and Jonathan has all of us here fighting his corner!

My best to you both. Xxx

Mike, I have responded to your recent news on the clinical trials thread, bummer!

My best to everyone here on PCUK.

Julia x

[InfoForMum]

Ah bugger it you two. What a disappointment. So impressed by how you both seem to be coping, although when coping is a way of life what's a bit more hey!

Thinking of you both and wishing you good luck with next steps.

Sarah

XXX

[marie souter]

Hi Cathy sorry to hear the scan results werent as good as you had hoped x More chemo then? Will be thinking of you and wishing you better results for the next scan

hugz

Marie

x

[Cathy]

Hi everyone,

Thank you so much for your replies. It really gives Jonathan a boost when I read them out to him.

Yes more chemo due to start next Thurs. Glad to be offered Gemcap as a 2nd line treatment albeit surprised.

Painkillers have been increased a bit and he is definitely chirpier today (so far).

Mike - I hope you saw my reply to your post on another thread? http://forum.pancreaticcancer.org.uk/viewtopic.php?f=24&t=1207#p10741

Yes, I do so hope we will be skiing downhill very soon, as I do so hope you will be (obviously only metaphorically in sunny Lanzarote!)

Lots of love

Cathy xx

[Birchen]

Hello Cathy and Mike

Terry has actually been on a combination of Gemcitabine with Capecitabine since June. He has had virtually no side effects that he couldn't cope with. We have been very pleased with these results until last week when the oncologist told Terry that although the pancreas tumour had no increase the two tumours in the liver have grown and have now become one. He is currently off all chemo but starts on Wednesday a combination of oxiplatin and capecitabine. Although he seems positive that Terry will be ok we are all worried sick again as had got used to the chemo he was having so it feels like we are starting all over again. Oncologist has also stressed that he wants Terry to touch base with our local hospice which also is daunting as both my Mum and Dad passed away here quiet recently but it is a lovely place and has a very calm feeling.

Anyway hope Jonathan and you Mike can start the type of treatment that is best for you both.

Speak soon love Lyn

[Cathy]

Hi all,

I haven't posted for a little while and I can see I have a bit of reading to do to catch up on all the new posts I have missed over the last couple of weeks. Thought this seemed a good time to update my thread.

Will try keep this short;

Over 2 weeks ago Jonathan (my partner - diagnosed with stage iv PC just over a year ago), started to complain of a sore leg. He has recently restarted chemo (Gemcap) and has had clots in the past and was taking clexane. He stopped clexane after 8 months after approval of the Oncologists so we were conscious that there was a risk he might get clots again and obviously aware of what symptoms to look out for.

We consulted the on duty Dr when he was having his last chemo infusion who said he thought the symptoms were caused by a side effect of Oxalyplatin he had been on earlier in the year and not symptomatic of a clot.

A day or so later his GP also has a look and thought it maybe some plaque in his blood and prescribed aspirin. She did say though that she would fax his oncologist and suggest and ECG as thie plaque might have been caused by his irregular heartbeat. So off we trotted home (or limped in Jonathan's case).

That eve (last Monday actually) we got a call from one of his Oncologists instructing us to go immediately to A&E. They had read the fax and recognised the symptoms, the symptoms were of a blood clot in an artery NOT a vein and needed immediate treatment as there was a danger of losing a leg (or life). So, we went to our nearest who referred us eventually to another hospital who had vascular surgeons. Eventually at 5am Tues morning he was placed onto a ward and at about midnight of that night he had surgery to remove a large clot and went onto the critical care ward.

Initially the op seemed to have sorted out the problem as blood flow came back and feeling in his foot and we went onto a normal ward. However a day or so later his foot started to go cold again and he started to lose feeling in it again. They did another scan this Monday and found 3 arteries in his lower leg blocked with a number of clots and so he had to be operated on agiain. In short, if they were unable to get rid of the clots then the best option would be to amputate....

He was operated on first thing Tuesday and, amazingly, they managed to remove each clot and restore the blood supply again. Poor Jonathan was in terrible pain as the blood supply restored itself. Apparently that is usual. The op has been deemed a success tho he may still lose a couple of toes.

Anyhow, he is amazing! He was climbing walls to come home and despite a very sore leg and needing physio he has been forcing himself to get mobile. He was up and down the hospital stairs yesterday on crutches and, after an anxious wait, was discharged yesterday evening, only 3 days after his op So, he is now home!

I don't think we are out of the woods quite yet but fingers crossed for no more clots and no more crisis this year...

This will mean I have time to catch up on all of you

Cathy xx

[J_T]

Hi Cathy well of course I'm up to speed with Jonathan's current issues and am so pleased he finally home with you, where he should be.

I wonder if that pain is similar, but worse than, when your fingers warm up after a snowball fight? That's pretty painful!

By the way, how much does he weigh now? Lol

Jools x

[Slewis7313]

Hi Cathy, good to see you are back (you have been missed), but sorry to hear about Jonathan's clotting problems. The operations seem to have done the trick and he seems determined as ever to get on with it even though it can't have been much fun for him. Did the Doctors attribute the clots in any way to having stopped the Clexane? My Oncologist is reviewing mine, but seems reluctant to stop it at the moment even though it has now been over 8 months since my Lung clot. Hope everything is now settled for a quiet and enjoyable Christmas.

Take care

Steve

X

[cestrian]

Hi Cathy

SO sorry to here of Jonathan's problem with clots - just about all you need, When my clot was spotted my specialist was quite adamant that I would be on Tanzaparin indefinitely so I've been on these injections since July and have no intention of asking for them to be discontinued. He did stress that the chemo and the cancer itself can greatly increase the risk if clotting and t b h I don't find them too much of a problem.

Anyway I'm pleased he's home where he wants to be in your loving care and hope all goes well from now on.