A forum specifically for patients only to use (e.g. newly diagnosed, recovering from surgery, having chemotherapy or patients in follow up).

Moderator: volmod

Michaela1
Posts: 53
Joined: Sat Jun 30, 2018 11:16 pm

Just my story....Michaela1.x

Postby Michaela1 » Wed Aug 01, 2018 11:45 pm

Well an update, and even on a new page!

What can I say.....came home feeling rotten and in pain not because of the chemo but still because of still feeling 10 months pregnant. With every movement/jar/bump, break at lights etc etc in the car on way home I felt was a personal attack on my stomach just for me....the things you think to yourself huh!?

Had to go Drs on way home who did a little search and feel if you get me 😧😞 who thinks the constipation is higher up and an enema wouldn't really do the trick, however sent district nurse round an hour or so later just to try, it helped a bit, but because I'd done a home one the day before too, gave me bad cramps.....geez this is such a whiny moan 🤣🤣. Dr says I have to take the nasty medicine that made me sick before as that is the only thing that it is going to work! He felt around tummy and does not think it is fluid build up which is good right??

Proceeded then to have row with new wife about nothing other than a build up I think of the unknown and trying to be there for each other but actually just being snappy. Jane not happy I wouldn't get more help and ring Mcmillian nurse, me probably trying to be braver, and hoping magic hot water bottle would do its stuff! Up shot we slept in seperate beds!😕

However, we have now sorted all of that out, and have booked to go away for a couple of days to Bakewell for some time for us....Jane did want to do the whole Theartre London thing, but in the end I kind of admitted even though I would love to do that I was scared I may be not well and spoil her time away and that would just make me feel anxious, so a nice peaceful retreat where there are places to visit seems a good choice. What do you think?

As for the first folrinox session, nurses were great, explained everything more than once, made you feel welcome, introduced staff, made us feel as relaxed as we could, felt mostly hot and sweaty which I still am, but that could also due to the fact I had both my ovaries removed a couple of years back due to endometriosis and am therefore on HRT for going through the change. Towards the end I felt a bit light headed and tired, but quite capable to just plod on out after it was all done. Like I say it was just then the travelling back when the swollen tummy kicked in and I started to feel sorry for myself....had few tears at Gp surgery.

Ok night sleep after enema woke up at 4 a.m, just took a paracetamol thinking if I can try and cope with that and not if i not take the morphine maybe I could eventually clear the constipation, or whatever it is!? That didn't work so well morphine at 5 a.m. Woke again around 10, forced water, then tea, then small bowl of cornflakes whilst feeling sickie, but knew I had to try! Think today I've managed about 3 ltrs of fluid to try like you all say to push the chemo through. Apart from that guys I do not seem to have any other side effects! Do they come later?

Question you may be able to help with, my tummy actually goes massive after I've eaten, like 5 to 10 mins after, the most I eat is a tin of soup and bread roll or cornflakes or rice krispies at the moment. I take 40,000 creon if I have soup or cereal, and maybe 10,000 for a packet of ringo crisps, or a half packet of fruit polo's....am I taking too much, not enough....is my actual tummy swollen problem not constipation but something happening to my tummy when I eat to make it so swollen?

I have baffled on I believe......mostly I think because I took my steroids too late,and now a sleeping pill is fighting against it. Thanks for reading this......i know it doesn't seem a pleasant read, but I think I just want to be honest.......and you know what.....it wasn't as bad as what I was expecting! Roll on tomorrow to release me from my bottle!
Night, and thanks again for listening.x

toodotty
Posts: 147
Joined: Sat Jun 09, 2018 4:17 pm

Re: Just my story....Michaela1.x

Postby toodotty » Thu Aug 02, 2018 6:59 am

Hi Michaela1,
Glad you got through the first round of treatment, but totally understand the 9th months pregnant bit, I too have had this, but this has lessened with each cycle. I am terribly constipated after chemo, but seem to have got a handle on this by eating less during this time. They push you to stuff your face because of weight loss but you should be able to catch up with calories second week.
Re Creon, sounds as though you are not taking enough. Ask the nurses to send you a fact sheet, basically you cannot overdose on it and will need to modify what you are taking dependant on what you are eating. You may also need to get a PPI (Proton pump inhibitor, such as Omeprazole) which works with Creon to help your digestion. Avoid {Modified - moderator - avoiding fatty foods is not recommended}, if at all possible, treat your digestion as though you have had a bad stomach bug. I have used Senakot (across the counter), but it was pretty severe for me, but did do the job. Speak to your GP they should be able to help a bit.
Keep the fluids up!
toodotty

kate2101
Posts: 64
Joined: Fri Jun 15, 2018 4:20 pm

Re: Just my story....Michaela1.x

Postby kate2101 » Thu Aug 02, 2018 7:54 am

Hi Michaela

First one down, well done!

Re constipation, it makes you feel so miserable it would make a saint snappy! My first experience I found after about day 5 I got horrible stomach cramps as if I had a radioactive curry inside me...but the result was goodbye constipation! Unfortunately it comes back back and it’s a case of trying to sort out what food suits your body and drinking loads. Try and up your fruit and veg intake. Think you said you’ve tried lactulose? I find a dose of that everyday is kind to my stomach and helps things along.

Good you’ve planned a break. Coincidentally, my first trip out after cancer diagnosis was Bakewell!

Xx

Veema
Posts: 503
Joined: Mon Feb 02, 2015 5:35 pm

Re: Just my story....Michaela1.x

Postby Veema » Thu Aug 02, 2018 10:14 am

Well done on getting through the first session and stating your own thread!

You ladies will be a fabulous support for one another. I understand your wife's feelings Michaela...I used to nag Nige constantly for just putting up with whatever symptom he had and the fact that he wouldn't seek help...but that's the difference between sufferer and carer. You'll find a happy medium and a greater understanding of each others needs whilst you are dealing with this. It took me a long to time to just step back a little and let him get on with it how he wanted to...I still had to wade in every now and again and put my foot down. But try not to go to bed on an argument...

Hope the next few days are okay and you don't suffer too many side effects of the chemo.

Vx

PCUK Nurse Jeni
Posts: 1021
Joined: Mon Jun 14, 2010 1:30 pm

Re: Just my story....Michaela1.x

Postby PCUK Nurse Jeni » Thu Aug 02, 2018 4:50 pm

Hi Michaela,

Sounds as though you need more creon also - certainly double the 40,000 dose, and more for the crisp snacks - at least 20,000.

You are welcome to call us or email us if you want more advice on creon. Details below.

Kind regards,

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

Michaela1
Posts: 53
Joined: Sat Jun 30, 2018 11:16 pm

Re: Just my story....Michaela1.x

Postby Michaela1 » Thu Aug 02, 2018 11:44 pm

Thank you Jenni and the rest of the the group's input!

Feeling a bit better today, released form my bottle of folrinox and promptly had an ice Lolly, it actually made me giggle how the cold was making my lips feel, but the Lolly prevailed.....so much so I had two!

My Mamillian nurse is dropping in tomorrow just for a check up, she cannot really help with the tummy, but still nice to see someone. Dietician rang me also and is going to send me some leaflets regarding creon.....i think I will probably phone this support team at some point, my only problem is I am really bad at talking on airwaves as I am bit of a phonophobe...if there is such a thing.....i would be useless in a call center! The dietician said as my stools are not floaty/orange/flush away ect (You would never dream of discussing this sort of thing before would you!)that she thinks I am ok with the amountof creon....it is so hard to know what to do.
I have had two sachets of the non orange flavour stuff today and one yesterday, plenty of gagging but no sick, but equally no movement....maybe it will take a couple of days to work. I have eaten smaller portions today, e.g half tin of soup with piece of bread to try and reduce the belly swelling after, still discomfort but not half as bad as the day before.
How is everybody doing today? Where do you all live? Maybe one day we could all meet up you never know.
Thank you for your reply's and support. I am finding my way around the site a bit better but find I actually have to go on user names to see if people have posted so sorry if I miss something. I know my experience isn't up to much use to you guys at the moment, but I will help if I can.

My brother is harping on quite a bit about the miracles of cannabis oil at the moment, and my older neighbour who has lung cancer tried it and it reduced quite a lot of his size of tumour and extra bits and said it really helped him. I did mention It to my oncologist who seems like he does not advocate it and said it they do not know enough regarding the impact it could potentially have on the folrinox.....i'm thinking of doing the 6 sessions, getting the results and have another think from there. My neighbour has a contact in Holland, how ever it is £700, but lasts a while apparently. Be interested to know your thoughts?
Night people.x

Michaela1
Posts: 53
Joined: Sat Jun 30, 2018 11:16 pm

Re: Just my story....Michaela1.x

Postby Michaela1 » Fri Sep 28, 2018 12:27 pm

Hi guys,
A quick update as I haven't been on the forum for ages due to ill health! I've just been released from hospital (prison) after being there for just over 3 weeks! Couldn't get the nausea and vomiting under control. It was strange as the sickness started just before I was due round 3. I was so bad, couldn't do anything, definitely couldn't eat (No food for 3 weeks) could hardly drink either due to a feeling it was getting stuck. Every time I swallowed I would have an indigestion like pain right at the top of my breastbone.
I was there for a week and it was kind of going ok, but then my consultant decided to change my anti sickness pills and send me for my 3rd round of chemo but as an inpatient. I had it and was more sick than ever! Anti sick pills got changed back and added too, and then they decided to follow up on the throat/indigestion feeling......one endoscope later they discovered I had thrush down my oesphagus and mouth so hence decided to treat that! They also wanted to fit a feeding tube which I declined as I felt my appetite slightly coming back after a couple of tablets for the thrush (glad I held off). I have lost 3 stone in weight and was losing muscle tone so I could see their argument, but to be honest I was scared of the thought, don't mind needles, pain etc, but idea of tube down my nose was a no no! Cannot stand any of the calorific drinks they tried me with either.
So upshot is, I've escaped (My mum calls it being on probation! Haha) and will have my 4th round this coming Tuesday but with extra anti sickness stuff. MY hair is thinning loads but havnt lost it yet (has anyone else?)
One positive is my ca 19 count kept going up with each cycle! However a blood test in hosp after a couple of days after round 3 showed my marker had gone down to 27! Not sure how good that is, but considering it was nearing 4000 I guess it's a positive sign!
Anyway how have all you lovely people been keeping?
Michaela

PCUK Nurse Rachel R
Posts: 28
Joined: Thu Jan 25, 2018 10:52 am

Re: Just my story....Michaela1.x

Postby PCUK Nurse Rachel R » Fri Sep 28, 2018 1:05 pm

Hi Michaela

Thanks for the update. You have had quite a time - well done for persevering through all that, it must not have been easy.

That is good news in getting home and also that your Ca19-9 has come down remarkably.

We wish you all the best as you continue chemotherapy.

You know where we are if you need further support.

Kind wishes

Rachel

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

kate2101
Posts: 64
Joined: Fri Jun 15, 2018 4:20 pm

Re: Just my story....Michaela1.x

Postby kate2101 » Sat Sep 29, 2018 9:01 am

Hi Michaela

Sorrry you’ve had a tough time recently. Glad you’re home now and so pleased you had good CA 19-9 results. Concentrate on building yourself back up now and get your strength back.

Had my 6th treatment Thursday (postponed for a week due to low platelets). Scan last Wednesday, told it may be two weeks for results, nail biting times! Been having some niggly pains in my hips recently which I can sensibly put down to things I’ve been doing but my imagination keep wondering if the beast is in my bones! My CA19-9 also dropped dramatically from being right at the top of the graph to right at the bottom (not sure of the start figure exactly but it was a 6 and lots of 0’s!).

Feeling pretty good overall, get a bit tired but life has returned to some normality here for now. I’m back in the kitchen again much to the family’s relief and get out as much as possible, shopping back on the agenda and jump in the car without a thought. Feeling very lucky that I also haven’t lost my hair, it’s hardly growing and thinning a bit but basically I look the same.
I’m eating well and I’m only a few pounds under pre-diagnosis weight.

Plodding on for now but can’t help worrying about the future. My brain seems to be able to deal with things most of the time, particularly when I’m feeling ok and I try and live in the moment but there are dark times when I wonder what’s down the line. Looking at possible alternative treatments, leaning towards America at the moment but need scan results first to see if I’m suitable. My worry is I apparently have multiple liver lesions.

Anyway, back to you. Look after yourself and concentrate on your nutrition. Good luck for round 4, hope you can get on top of the sickness. Stay positive x

toodotty
Posts: 147
Joined: Sat Jun 09, 2018 4:17 pm

Re: Just my story....Michaela1.x

Postby toodotty » Tue Oct 02, 2018 7:08 pm

Hi Michaela1,
I am so sorry to hear that you have been so unwell, you really have been through the wars. I had 6 days in hospital due to an infected biliary stent and yes it did feel like prison. It was the most depressing and exhausting experience of my life and I wasn't even ill after 24 hours but was kept in under observation. I too lost 2kg in 6 days because the food was terrible, I kept nipping out to Asda down the road to get myself something to eat. Had there been a restaurant nearby I would have been a daily visitor.
Re muscle tone, yes that will be a problem but it does come back quite quickly. It really is important to keep going even if you feel rotten.
I hope you start to feel better soon,

toodotty

Michaela1
Posts: 53
Joined: Sat Jun 30, 2018 11:16 pm

Re: Just my story....Michaela1.x

Postby Michaela1 » Wed Oct 03, 2018 6:02 am

Hi everyone,
Thanks for you replies and words of encouragement, they mean a lot. Round 4 today, so been asked for ages!!x

toodotty
Posts: 147
Joined: Sat Jun 09, 2018 4:17 pm

Re: Just my story....Michaela1.x

Postby toodotty » Thu Oct 04, 2018 5:50 pm

Hi Micheala1,
I hope Round 4 has gone well, I think this was the turning point for me. Certainly my pain disappeared at this point and I started to feel a lot brighter.

toodotty

Michaela1
Posts: 53
Joined: Sat Jun 30, 2018 11:16 pm

Re: Just my story....Michaela1.x

Postby Michaela1 » Sun Oct 07, 2018 8:48 am

I hope so Toodotty! You begin to wonder why do I bother after a while it seems when all it feels like is a constant battle all the time!It feels like most of the time you are just ill and deflated, and have no good news, or any happy/normal time! But keep battling we must! Love to you all.xx

kate2101
Posts: 64
Joined: Fri Jun 15, 2018 4:20 pm

Re: Just my story....Michaela1.x

Postby kate2101 » Sun Oct 07, 2018 12:52 pm

Hi Michaela

I can echo toodotty’s words, I definitely started to feel more ‘normal’ after round 4, my appetite increased and I started gaining weight. I know when my ‘dip’ days are likely to be and take it easy then but I have more energy now, even during the down times. I really hope you follow the pattern and you start to feel better after the rough time you’ve had recently.

Keep smiling! x

Michaela1
Posts: 53
Joined: Sat Jun 30, 2018 11:16 pm

Re: Just my story....Michaela1.x 1st

Postby Michaela1 » Wed Oct 17, 2018 10:31 pm

Well it was round 5 today and so far feeling o.k, even had a bit of home made lasagne my daughter made at school!
Just to let you know they messes up my blood results that said my ca19 marker had gone down to 27......it was in fact 5030! Apparently the mistake was in the lab as I saw the print out of the results myself! Was super gutted, words can't even explain the disappointment.
But today the 1st bit of gd news is in fact they have actually gone down now to early 4000!
Got really sensitive finger tips so wearing gloves! Haha,does look a bit strange.
How is everybody doing?x