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rachelqt
Posts: 175
Joined: Tue Sep 20, 2011 9:18 am

Update on my Dad

Postby rachelqt » Sat Jun 23, 2012 11:03 pm

Hi All,

Just as my Dad seemed to be doing so well, things have now went downhill and were trying to get our heads around everything.

6 Weeks ago we got dads results which were positive as things looked stable although there was a spot on his liver, but they were not too concerned about it. We also reported about my dads diarrhea but they told us they did not think Creon should be used yet as it was not offensive enough and the stools were flushing ok. We were told to go and enjoy the summer until the next scan.

So now in the last 6 weeks, dad has had one bad incident of diarrhea after a heavy meal out (steak). So we phoned the local doctor who gave us Micro Creon to be used on his main meal every other day. We actually used a little everyday on his meal and his mildish diarrhea seemed to clear but then went the other way and he seemed to be constipated for a few days. His appetite started to decrease until he was eating only in the morning and then started to vomit all through the night. He said he had no pain only a discomfort up his side like indigestion. He found a short relief after vomiting only for it to build up again. He has now lost over a stone in weight in 6 weeks. He still has very good energy levels though.

He is now in hospital from yesterday. They feel he has a blockage somewhere. He has a tube down through his nose and into his stomach which is draining out the build up of fluid, bile i think as its greenish. He found instant relief from this. He is also on fluids as he was dehydrated. He was suppose to go for a scan today only his kidney function is slightly down, so they are hopeful for the morning. There is talk of placing another stent.

Just afraid now that the tumor has spread or got bigger somewhere else to cause this blockage?? Anybody any experience of anything similar?

Thanks Rachel Xxx

laura
Posts: 385
Joined: Thu Jul 01, 2010 1:53 pm

Re: Update on my Dad

Postby laura » Sat Jun 23, 2012 11:51 pm

hello rachel, sorry to read of the blip with dad, what a bummer, if its any consolation bri had a 2nd stent only a few weeks after his first one, they can get blocked, i dont understand your drs views about the creon, i thought poo,the colour, floating, grease etc was an indication of a problem, not an indication for the need, or not, of creon!,
mind im no specialist, my understanding, gleaned from the proffessionals, was that problems with the pancreas and involving the digestion of food required creon, CONSTANTLY.

its aim is to be a REPLACEMENT for the pancreas's work, which it can no longer do,! have you tried questioning the drs on this, its difficult i know but perhaps their knowledge is not too great, i know when bri was in hosp one time, no one including drs knew about it or HOW to take them!!!!
can you go armed with some info from this site, am sure jeni would do that for you [ sorry jeni] really hope you see an improvment soon love, take care, love to dad and you laura xx

rachelqt
Posts: 175
Joined: Tue Sep 20, 2011 9:18 am

Re: Update on my Dad

Postby rachelqt » Sun Jun 24, 2012 9:40 pm

Hi Laura,

Yes think your totally right about some doctors having a lack of knowledge about Creon. Dads Oncoloigst just seemed to think his pancreas was working quite well without it?

Dad never got a scan today, I hope it goes ahead in the morning. The doctors at the hospital feel this situation has nothing to do with the creon (me and mum were thinking it maybe did not agree with him or we gave him too much). They also dont think that his stent is blocked. I have a feeling it may be to do with the small intestine/bowel area. They had him off his drip today and just hooked it back up for tonight. They also have him measuring his fluids that he is drinking, think they want to see if whats going in is coming back out. He still is eating very little.

All so confusing, just need answers now to move forward. My head is sore now just thinking about different possibilities, feel like chopping my head off..lol

Thanks for your kind words Laura, hope you and Bri are well
Chat soon..Rachel xx

PCUK Nurse Jeni
Posts: 1082
Joined: Mon Jun 14, 2010 1:30 pm

Re: Update on my Dad

Postby PCUK Nurse Jeni » Mon Jun 25, 2012 5:28 pm

Hi Rachel,

Creon micro every other day is ineffective if a person has pancreatic enzyme insufficiency. As Laura correctly said, it needs to be taken all the time, with every morsel of food or milky drinks. There is only one way to diagnose it properly - a faecal elastase stool test. There will be no debate then about whether he needs it or not.

You cannot overdose on it, as it is an enzyme which is normally produced in much larger amounts by the pancreas. Also unlikely that it would cause stomach upset. If he has a NG tube draining, then a blockage is very likely.

Feel free to email me at support@pancreaticcancer.org.uk if you have complex medical questions like this again as Laura said. Only too happy to help.

Jeni.

rachelqt
Posts: 175
Joined: Tue Sep 20, 2011 9:18 am

Re: Update on my Dad

Postby rachelqt » Mon Jun 25, 2012 9:32 pm

Thanks Jeni for the reply.

The Creon was working very well as he was having more normal stools. My mum and I actually went against the doctors advise of using it only every other meal, we decided to go with the great advise about the usage of it on this forum. Its just unfortunate that he started to experience these symtoms a week later.

This morning Dad had an X-Ray and a CT Scan. He was then told it was a definate blockage and that he will be sent for a Scope test for further investigation in the morning.

So tomorrow is another day and hopefully we get closer to finding out and sorting it out. X

laura
Posts: 385
Joined: Thu Jul 01, 2010 1:53 pm

Re: Update on my Dad

Postby laura » Mon Jun 25, 2012 10:19 pm

hi rachel, glad things are moving along for dad, am sure it doesnt seem fast enough! await, with you, the results, sleep well all of you, as you say tomorrow is another day, lets hope its a good one,
love laura xx

louiepc
Posts: 238
Joined: Wed Aug 10, 2011 10:38 pm

Re: Update on my Dad

Postby louiepc » Mon Jun 25, 2012 11:03 pm

Hi Rachel

Just seen your post, I'm sorry your Dad has had a set back.

Oh how worrying for you all, and frustrating when the doctors obviously don't understand that the medication your Dad needs. Is there a specialist hospital/doctor in your area that knows more about PC and drug usage/effects than the ones who are treating him at the moment? I know they are few and far between, but worth asking.

I must admit, I found this site invaluable for going armed with information I really felt that it helped Mum.

I hope tomorrow works out well for you all. It is so worrying the not knowing, try and get some rest and I hope and pray that whatever is causing the blockage can be dealt with swiftly.

Lots of love.

louie x

charney
Posts: 74
Joined: Wed Mar 14, 2012 2:29 pm

Re: Update on my Dad

Postby charney » Tue Jun 26, 2012 2:04 pm

Rachel
I am so sorry to hear about your dads set back, he was doing so well.
It is such a worrying time when these set backs happen. I do so hope they get
it sorted quickly and he is up and about soon. xx

cheryl

rachelqt
Posts: 175
Joined: Tue Sep 20, 2011 9:18 am

Re: Update on my Dad

Postby rachelqt » Thu Jun 28, 2012 9:05 pm

After nearly a week of nerves and sleepless nights, today the multi disciplinary team got together to discuss my dads case and then was followed with a meeting with us.

Thankfully it turned out more positive than what we expected. Dad has a blockage in the duodenum, caused by his tumor getting bigger but not by a second tumor which they first suspected. They could not put a stent in as it was too tight, although they feel the best option is for a gastic bypass to give him a better quality of life and hopefully stop vomiting and start eating again.
He also has a blockage in his stent which has caused an infection, so he is on antibotics until they unblock it.

The plan is to move him to a different hospital on Sunday, for procedure on Monday to unblock his stent and then on Thurs/Fri get his gastric bypass.

Were grateful to be given this plan of action to help sort out this problem. The staff and team have been wonderful looking after him.
Now just hope that everything will run smoothly and we get him home soon.

Hope everyone is well...Rachel xx

Ella50
Posts: 57
Joined: Sat Jun 02, 2012 3:14 pm

Re: Update on my Dad

Postby Ella50 » Thu Jun 28, 2012 9:14 pm

XXX

love Ella xx

laura
Posts: 385
Joined: Thu Jul 01, 2010 1:53 pm

Re: Update on my Dad

Postby laura » Thu Jun 28, 2012 11:51 pm

hi rachel, been wondering how dad was, so pleased you have a plan of action, makes everyone feel better, fingers and everything else crossed for a speedy intervention, love to your dad and strength and love to you, laura xx
ps we are doing fine, going to get our passports renewed, bri wants to drive [?] around spain perhaps nx feb, also would like to go to gibralter, his mother was born there, and has never been to ireland so lots to think about,!!
keep usposted re dad wont you?

rachelqt
Posts: 175
Joined: Tue Sep 20, 2011 9:18 am

Re: Update on my Dad

Postby rachelqt » Thu Jul 05, 2012 11:39 pm

Hi,

Dad is for his Operation tomorrow, I pray that it goes well and they can resolve this blockage. Stent was unblocked on Monday. They have put a feeding tube through his neck on wednesday, which is attached to a vein and providing nurishment into his bloodstream. He has so many tubes now and oxygen, it seems so frightening!
Will keep you posted x

Laura - im so glad things are still stable for Bri, enjoy the goodtimes! If you ever venture to Ireland you will have to look me up!

Rcahel Xx

laura
Posts: 385
Joined: Thu Jul 01, 2010 1:53 pm

Re: Update on my Dad

Postby laura » Fri Jul 06, 2012 12:11 am

dear rachel, will be thinking about your dad, and you, tomorrow, lets hope for a speedy recovery, tubes do look awful, but all there for a reason, stay strong, love laura xx

charney
Posts: 74
Joined: Wed Mar 14, 2012 2:29 pm

Re: Update on my Dad

Postby charney » Fri Jul 06, 2012 9:45 am

Hi Rachel
I have been wondering how your dad is, sending my best wished for today and I
hope he is feeling brighter soon.xx

louiepc
Posts: 238
Joined: Wed Aug 10, 2011 10:38 pm

Re: Update on my Dad

Postby louiepc » Fri Jul 06, 2012 1:21 pm

Hi Rachel

Lots of love and best wishes being sent to you, your family and of course and your Dad. I hope and pray that the operation has been a success.

The tubes do look so scary, I remember when my Dad had his heart operation, goodness me, there was about 15 tubes in at one point, but they are doing him good, and getting him through this tricky time.

Lots of love, looking forward to hearing your good news very soon.

louie xxx