A forum to focus on treatment related issues and side effects from treatment

Moderator: volmod

Forum rules
Please see the messages in our "Rules" section

The posts on this discussion board are made by members of the General Public and are not intended to constitute medical advice
Iwillsurvive45
Posts: 4
Joined: Tue Nov 18, 2014 11:16 am

New to forum

Postby Iwillsurvive45 » Fri Nov 21, 2014 11:04 am

Hi I am new to this forum, I had my whipple 9 weeks ago, but also had the whole pancreas removed so am now insulin dependant, although everything is going well I am still losing weight I am taking creon tablets but cannot keep the weight on.

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: New to forum

Postby nikkis » Fri Nov 21, 2014 5:08 pm

Hi and welcome to the forum,

Sorry to hear you have had to have this major surgery, but glad to hear on the whole things are going well.

My husband had the same surgery last year, and keeping weight on initially was a struggle. Have you seen a dietitian and discussed drink supplements? They tend to have quite a lot of sugar in them, so we adjust his insulin accordingly. Paul currently has 2 Peptamin a day, which are easily digested. It is also a good idea to have smaller meals more often to start with, but Paul can now eat the same as the rest of the family. I make lots of cakes, which has resulted in his weight staying the same and mine unfortunately increasing! The nurse here can give you lots of advice, you can email or ring them.

Best wishes,
Nikki

Iwillsurvive45
Posts: 4
Joined: Tue Nov 18, 2014 11:16 am

Re: New to forum

Postby Iwillsurvive45 » Fri Nov 21, 2014 7:40 pm

Thanks for the advice Nikki it is so hard at the moment as the diabetes still isn't under control and I also have to start chemo after Christmas

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: New to forum

Postby J_T » Fri Nov 21, 2014 8:02 pm

Hello and welcome! Its good you have been able to have surgery but I do know its a difficult and tough procedure so hats off to you for dealing with it. I don't have ant direct or indirect experience of Whipples but there are others who do and the nurses here, Jeni and Dianne are available Mon to Fri. They are brilliant and will willingly give you any help they can. Do give them a ring or email on Monday. Good luck to you.

Julia x

sandraW
Posts: 1040
Joined: Thu Oct 31, 2013 5:38 pm

Re: New to forum

Postby sandraW » Fri Nov 21, 2014 11:36 pm

Hi, welcome to the forum, sorry don't have any advice but you can be sure Nikki has lots, just wanted to say hello, take care sandrax

Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: New to forum

Postby Didge » Sat Nov 22, 2014 10:36 am

I don't know much about this as my fella was already diabetic so a bit of tinkering is all he has had to do. But I would also say, give the nurses a ring. It's quite difficult to know all that you can do without expert advice and they are experts!

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: New to forum

Postby nikkis » Sat Nov 22, 2014 12:37 pm

The diabetes get easier, I promise. We have been told to concentrate on making sure that he doesn't go hypo, and not to worry if he goes a bit high from time to time.
Nikki

Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: New to forum

Postby Didge » Sat Nov 22, 2014 1:29 pm

Ah yes the hypos. We do carry sweets just in case as this is a bit more unstable than it used to be.

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: New to forum

Postby nikkis » Sat Nov 22, 2014 1:46 pm

Yep, we always have sweetswith us, but I end of eating those too!

Iwillsurvive45
Posts: 4
Joined: Tue Nov 18, 2014 11:16 am

Re: New to forum

Postby Iwillsurvive45 » Sat Nov 22, 2014 5:12 pm

Hi, thanks for all your comments, it is nice to know I am not alone, I am feeling a bit lost at the moment although I had the whole pancreas removed and the surgeons said they removed all the tumour, the margins were not completely clear so have to start chemo soon. I have met with the oncologist but as my wound has not completely healed chemo cannot start, I was just wondering how long after operation chemo usually starts and if anyone else has same problem I expect everyone feels like this at first, its just a waiting game.

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: New to forum

Postby nikkis » Sat Nov 22, 2014 5:59 pm

Paul didn't have clear margins either after surgery, and it had also spread to the lymph nodes in his chest. It is rather disheartening when you have been through so much, but they still haven't clear margins. His wound was awful, as they went in twice in 2 weeks, but we were very lucky in that we had a fantastic, experienced district nurse who sorted it out, and it is surprising how quickly it can heal once it starts. I would ask about seeing a wound specialist nurse if it not improving.

Paul started chemo about 9 weeks after surgery, but to be honest a bit longer would have been good as he was pretty rough. My understanding from the nurses here is that they like to start within 12 weeks, but I would have chat with them next week to clarify this.

Nikki

Iwillsurvive45
Posts: 4
Joined: Tue Nov 18, 2014 11:16 am

Re: New to forum

Postby Iwillsurvive45 » Sat Nov 22, 2014 6:54 pm

Thanks nikki, I will chat to nurses next week, how do I contact them

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: New to forum

Postby nikkis » Sat Nov 22, 2014 7:01 pm

You can email at - support@pancreaticcancer.org.uk or ring on - 0808 801 0707 and speak to Jeni or Dianne
Nikki