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

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wackywacky
Posts: 99
Joined: Thu May 01, 2014 10:25 am

And another ones got it

Postby wackywacky » Mon May 12, 2014 1:49 pm

Hi
To you all, been reading for last few weeks since husband been diagnoised with the little B. Brief history, just before Christmas he had acid, still got acid February and over counter stuff not working. Went to Doctors who gave him a months supply of Lansoprazole also did tests for ulcers. Still a niggling ache after a month now and then, went back to doctors who advised finish course and come back in 2weeks if ache still there. Finished course 2 days later all started rushed to A and E. Up to this point only symptom acid fit bloke for 54 does drink and smoke.

In hospital 2 weeks were found a blockage, had a duodenum stent put in so food could pass through. All his blods came back normal all the time, blood pressure fine, once pain under control - x ray ct scan mri scans done found tumour head of Pancreas next to aorta and veins biopsy done as could not say what it was. Did loose a stone while in hospital sent us home once eating and pain under control to wait for results.

2 weeks later went for results yes we have PC Inoperable due to position treatable not curable. Little B is 2cms. Given Creon.

2 weeks later went to see oncologist given 3 options
Folfirinox
Gem-Cap
Do nothing

We go tomorrow to tell them what we want to do think I know what he is going to do as he is a fighter, but you never know life throws some things at you.

The treatment we have been given and advice we have been given so far as been brilliant cant fault the NHS
Last edited by wackywacky on Mon May 12, 2014 3:43 pm, edited 1 time in total.

Bowie
Posts: 115
Joined: Sat May 03, 2014 10:35 pm

Re: And another ones got it

Postby Bowie » Mon May 12, 2014 2:19 pm

Hi, wacky wacky, I'm so sorry you have needed this forum too, but at least you are getting treated quickly. In James' case it's the waiting that's really causing extra stress and having to work out for ourselves what to do and how to get help and most of it has come from others' experiences on this site.

I hope it goes well for you both tomorrow.

Fiona X

PCUK Nurse Jeni
Posts: 1063
Joined: Mon Jun 14, 2010 1:30 pm

Re: And another ones got it

Postby PCUK Nurse Jeni » Mon May 12, 2014 2:41 pm

Hello Wacky,

Welcome to the forums.

So sorry to hear about your husbands diagnosis. It seems like a good plan so far, and I hope that your husband is able to have the chemo he chooses.

In the meantime, if you have any questions or concerns, please do drop us an email to support@pancreaticcancer.org.uk. I hope the appointment goes well tomorrow.

Kind regards,

Jeni, Support Team.

RLF
Posts: 227
Joined: Tue Nov 19, 2013 9:30 am

Re: And another ones got it

Postby RLF » Tue May 13, 2014 1:50 pm

Thats a small tumour at just 2cm, I think that's the same as my partners when he was diagnosed. Can they see the tumour is wrapped around the blood vessels on a scan or is it just the position that concerns them? It might be worth getting a second opinion as some Drs are very different in their idea of what is operable and what isn't. There is no harm in trying anyway especially if he has no spread (didn't see it mentioned). Nanoknife treatment as an option too if surgery isn't possible, but as you may have seen if you've been reading on these forums it is a pricey procedure if you don't have any private health care.
Hope you get some better news soon,
Rob
x

wackywacky
Posts: 99
Joined: Thu May 01, 2014 10:25 am

Re: And another ones got it

Postby wackywacky » Tue May 13, 2014 10:12 pm

Well went today and 4 hours in hospital, theres always a story with us - We are going to have all guns Folfirinox but cant start yet as we have decided to go yellow in our eyes from this morning (Jaundice).Bloods done while there and had to wait for results billarubin levels have gone up. We have to have a stent in to drain the gallblader Been told will be Thursday Friday this week so cant start with the Folfirinx yet till this sorted so look as if going to be another 2 weeks, everything seems to be 2weeks.
Now I had my book with all my questions which were answered, but the main one really I should have asked was if gallbladder blocked does this mean tumour growing never asked that as not wrote down lol and only thought about it driving home any reply appreciated.

Fiona I hope you get your answers soon as this B is a bloody nightmare, as you have said you find a lot out on this site, and what we are going through at the moment other people have been there.

Rob, they have said its round the Heptatic Vein (think iv got that right) so from what been told not good. The little B as not spread yet. No private Healthcare but recently moved to a samller house for our old age (that's a laugh)

Think to day as took its toll on him gone to bed shattered at nine not like him, but we did manage a pint at local first.

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: And another ones got it

Postby Slewis7313 » Wed May 14, 2014 10:25 am

Hi Wacky and welcome to the place where no one wants to be, but where you will be most welcome and find real support. Based on what you have said, it is indeed a small tumour with no indication of it having spread which is a good starting point by Pancreatic Cancer criteria. The second opinion is never a bad idea, especially with vessel involvement and is something you are entitled to request. Whilst I have not had jaundice since diagnosis in December 2012, it is generally caused by pressure on the bile duct which passes through the Pancreas on it's journey from the Gallbladder to the Duodenum. It is quite common in tumours located in the head of the Pancreas and I believe the stent resolves the jaundice issues quite quickly once fitted. The fact that your man is young (I am rapidly approaching 60) and fit will make the treatment more bearable and I have myself started Folfirinox this week and not too much of a problem so far (I had the Gemcitibine for 4 months last year, again with few side effects). Hope all goes well with the stent and that the treatment can follow on quickly.

Take care and good luck to you both!

Steve
X

RLF
Posts: 227
Joined: Tue Nov 19, 2013 9:30 am

Re: And another ones got it

Postby RLF » Wed May 14, 2014 8:45 pm

Sorry to hear about the Jaundice, it doesn't necesarrily mean the tumour is any bigger, but that the bile duct blockage has now been there long enough for the bile to become visible in the skin and eyes. Carl's first symptoms were pain and jaundice and his was 2cm too.

Please please get a second opinion and the sooner the better. I'm not saying they are wrong, but as I said before some Drs are very different in what they consider to be serious artery involvement and might still be hope of some surgery.

There is the optiont that folfirinox will shrink the tumour enough to take it away from the artery and then surgery can take place. From all the reading I've done it's only folfirinox that seems to have that drastic impact on tumour size.

Hopefully either another Dr will consider surgery or the chemo will shrink it during the next 3-6months and then surgery will remove the blighter.

Hope you are coping ok, it's tough being the support mechanism for someone
Rob
x

wackywacky
Posts: 99
Joined: Thu May 01, 2014 10:25 am

Re: And another ones got it

Postby wackywacky » Thu May 15, 2014 11:40 pm

Hi
Well things have gone to plan went in to hospital this evening, and went down for another CT scan at 9.30, speaking to a nurse and she said this sort of procedure is done on a Friday so things look good, as I left when he went for scan they told him nil by mouth from midnight so fingers crossed will be having stent in tomorrow. he has lost some weight this week though hopefully with stent in he will get his appitite back.

Thank you for your support and comments which we have taken on board,
talk soon

wackywacky
Posts: 99
Joined: Thu May 01, 2014 10:25 am

Re: And another ones got it

Postby wackywacky » Sat May 17, 2014 1:19 pm

Hi stent put in yesterday, kept in over night, phone call at 10 this morning get here quick before they change their minds I can come home, so we are home now - his colour is nearly back to normal.
Also opened post and we have an appointment to see oncologist on 27th of month like they said they would and another letter to have PICC line fitted 5th june and another letter to go in 6th june to start, providing everything is ok with him, so they have done what we asked for things to be put into place. I feel very lucky when I have read some peoples accounts of how they have been treated. So steve rob any tips welcomed for next stage, have started preperation 100% alchol free mouth wash, bio oil for bath , moisturiser for skin, hes not happy but will get over it lol

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: And another ones got it

Postby Cathy » Sat May 17, 2014 5:50 pm

Hi Wackywacky

Glad he is home.

My partner also had folfironox. Tips:

Ask for the atropine (pain killing injection for the irinotecan) to be given into the tummy - less stingy
Start a diary noting days of chemo, drugs taken and side effects
Although my partner didn't do this (ahem) try avoid cold drinks and keep hands and feet warm.. Tinglyness is a common side effect
Difflam is a good mouthwash for sore mouths (ask for a prescription if you need it) - also a lip salve and mouth ulcer pastels (Superdrug have these)
Make sure they take blood sugar reading when they do blood tests (my bf got steroid induced diabetes)
Dry pro do a Picc line cover - useful for bathing and swimming

Best of luck

Cathy xx

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: And another ones got it

Postby Slewis7313 » Sat May 17, 2014 7:08 pm

Great news that that the dates and commitments are all falling in to place and that the stent seems to be doing the trick.

My tips are:
Follow Cathy's tips......she has a wealth of documented experience with Folfirinox.


Steve
X

SueH
Posts: 18
Joined: Fri Mar 21, 2014 9:33 pm

Re: And another ones got it

Postby SueH » Sun May 18, 2014 1:06 am

Hi Wacky Wacky

I would just like to add one more tip for your husband. My husband found a adjustable bed invaluable. We bought a double with two separate mattresses. When he felt sick or had acid integestion, he was able to raise himself up. This made him much more comfortable. A pile of pillows could also do the trick.

If my husband had any trouble some side effects he told his oncologist. He would always come up with a solution. Never suffer in silence.

Blood thinning injections are often prescribed to people with p.c. If your husband is not on these, suggest it to the doc's. They can prevent problems before they occur. My husband had these as a preventative measure.

Best wishes

Sue
Good luck with the treatment.

wackywacky
Posts: 99
Joined: Thu May 01, 2014 10:25 am

Re: And another ones got it

Postby wackywacky » Tue May 20, 2014 10:02 pm

Hi
Well I said at beginning theres always a story with us, as I posted got him home Saturday well, no pain, after stent fitted to clear Jaundice, only home four and a half hours then back at A and E in pain worse than when all this sorted - turns out Billary sepsis and over loaded gallbladder. They seem to be getting things sorted after having a drain in gallblader (some right crap coming in to that bag just like black tar but seems more watery today)having antibiotics, saline, and liquid paracetomol pumped into him (had morphine to set off with to get pain under control - hes not been with us the last few days but when I arrived today at main enterance who should be walking out to have a cig
my beloved.....hes still not right and rather irritable for want of a better word, but I understand all this, one question though his stomach is swollen nurse said could be because hes not gone to loo for a few days and she would note it down now not sure about that answer, so you brill people out there any thoughts

Hopefully next few days should see a big improvement and we will be ok for 5th and 6th June, who knows its a funny old world we live in

By the way thanks for all the tips re the chemo, but not getting a new bed only just got one, we have a spare double am sure we will be ok with that lol

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

Re: And another ones got it

Postby sandraW » Wed May 21, 2014 12:46 am

Hi Wacky,
You certainly seem to be having a time of it the moment, I hope your "beloved" continues to improve, funny that's how I refer to my husband too, usually, when I'm not too impressed with him!! Sorry can't help with the swollen tummy symptoms, but I am sure some of the others will be able to.
I hope he's recovered enough for his treatment to start on schedule, then at least you feel as though you are doing something!! and not just waiting around. take care sandrax

Bowie
Posts: 115
Joined: Sat May 03, 2014 10:35 pm

Re: And another ones got it

Postby Bowie » Wed May 21, 2014 9:12 am

Wacky hi, sorry to hear about the set back, but as you say as least you are getting some plan of treatment. We are still waiting and every addition ache and pain James gets, he is still really well, but had a sore back thus morning and I immediately thought has it metastases-ed somewhere else? I just want him to start treatment so that we can get over this and back to normal, well a new normal.

Hope your beloved gets on OK and you too. Fiona X