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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Tina1963
Posts: 7
Joined: Mon Dec 11, 2017 8:11 pm

Diagnosed in May 2017

Postby Tina1963 » Fri Dec 15, 2017 12:54 pm

I was diagnosed with locally advanced pancreatic cancer in May this year. I had to have a stent fitted in my bile duct as the tumour was causing a blockage. I am 54 years of age. I had 3 months of chemotherapy from June till Aug which I coped really well with as it was only once a fortnight. I just suffered the tiredness more than anything. In Oct I started to feel unwell where a ct scan revealed that my stent had gone missing.? I have not had to be re stented as I have no blockages. Since this episode my appetite is zero. I have tried build up shakes but they go straight through me & tbf taste pretty vile. I have just finished 5 days of radiotherapy purely for pain management as I am now experiencing pains in my stomach & my lower back. 5 days was enough as I constantly felt nauseous & tired & in lots of stomach pain. I now have to wait to see my consultant in a months time to find out my next cause of treatment where they are talking about more chemo. Is there any light at the end of this long tunnel? Am I ever going to feel well & be able to eat & enjoy a meal. I also have numbness in my fingers & toes which they are saying are after effects from chemo, baring in mind I finished that nearly 4 months ago. Has anyone else experienced similar problems? I am finding this so hard to come to terms with. I have a supportive partner & family & friends but I just feel I need some reassurance. I am new to this site so would appreciate any input. Thank you & kind regards Tina.

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

Re: Diagnosed in May 2017

Postby Didge » Fri Dec 15, 2017 2:59 pm

Hi Tina. I’m on a bus but just wanted to say a quick hello. Was it folfirinox you were on? That can cause numbness but does often improve with time. It’s a very rollercoaster disease so hopefully you will get periods when you feel better and have an appetite. Steroids can sometimes help. I’m sure more will post but didn’t want you to wait too long x

Tina1963
Posts: 7
Joined: Mon Dec 11, 2017 8:11 pm

Re: Diagnosed in May 2017

Postby Tina1963 » Fri Dec 15, 2017 3:54 pm

Thank you Didge. Yes, it was folfirinox.
I was also given a course of steroids for two weeks but they didn't really help. I had a letter through this morning to see a dietitian in Jan but apart from these build up drinks I really don't know what else they can suggest. Im not at the stage where I'm feeling weak as I'm trying to drink plenty of fluids but I'm even finding that hard work. That is one of my main concerns at the moment as I've lost 13lbs in about 3/4 weeks. I really know I need to eat but when you have no appetite it's virtually impossible. X

Veema
Posts: 498
Joined: Mon Feb 02, 2015 5:35 pm

Re: Diagnosed in May 2017

Postby Veema » Fri Dec 15, 2017 7:38 pm

Hi Tina

Folfirinox is renowned for causing peripheral neuropathy and it rarely gets any better...the nerves in your extremities are damaged, it was the only side effect of the chemo my husband seemed to have and it's due to the oxaliplatin element (he did have 24 cycles of folfirinox though). Just make sure you've always got gloves and nice warm socks on in this weather as the cold seems to make it worse.

With regards to the appetite, procal powders are excellent at adding calories and protein to drinks and food. I appreciate it's difficult if you don't have a great appetite, but you can have a glass of milk, for instance, with a couple of spoonfuls of procal in and it adds a few hundred calories and also gives you a protein element. It was the one thing I found invaluable when my husband's appetite went - I even heaped it into the supplement drinks! I am assuming you're taking creon? If not, you really, really need to be.

Any other questions, please shout.

Vx

Tina1963
Posts: 7
Joined: Mon Dec 11, 2017 8:11 pm

Re: Diagnosed in May 2017

Postby Tina1963 » Fri Dec 15, 2017 8:43 pm

Hi Veema. I was advised by a dietitian that I'm not ready for creon yet? I actually purchased some but it read to take one before a full meal & as I'm not eating meals at all I was violently sick that evening so straight away it put me off.
I will have to give these procal powders a try & I will mention it when I see the dietitian again in Jan.
I just always seem to be playing the waiting game.
Cheers Veema. X

Veema
Posts: 498
Joined: Mon Feb 02, 2015 5:35 pm

Re: Diagnosed in May 2017

Postby Veema » Sat Dec 16, 2017 12:19 pm

Unfortunately, your dietician is wrong. Creon replaces the digestive enzymes that your pancreas will not be making properly, if at all. My husband actually took about 6 with a full meal and 1 or 2 with snacks or a milky drink. Please speak to your oncologist about this as it will make you feel much better and will also help with the weight loss. Without creon, your body will not be absorbing the nutrients from what little food you are managing to eat and this is the reason the build up shakes are going straight through you. It really infuriates me that medics do not understand the importance of creon.

If you want a medical opinion, please speak to the nurses and I'm sure they will concur that creon is definitely a requirement.

Vx

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

Re: Diagnosed in May 2017

Postby Didge » Sun Dec 17, 2017 12:58 am

While I think creons are often underused not everyone needs them. It depends where the tumour is I think. My partner never took creons and never seemed to need them. I would advise talking to the nurses as they will be able to advise whether you should be questioning this or not x

Veema
Posts: 498
Joined: Mon Feb 02, 2015 5:35 pm

Re: Diagnosed in May 2017

Postby Veema » Sun Dec 17, 2017 10:55 am

I agree that in the case of a tail tumour (the tail being the part responsible for the production of insulin), creon probably would not be required, but Tina's original post suggests the tumour is in the head of the pancreas, which is the part that produces digestive enzymes, hence the need for creon.

Didge...was your partner's tumour a tail tumour?

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

Re: Diagnosed in May 2017

Postby Didge » Sun Dec 17, 2017 11:45 pm

It was.

Tina1963
Posts: 7
Joined: Mon Dec 11, 2017 8:11 pm

Re: Diagnosed in May 2017

Postby Tina1963 » Mon Dec 18, 2017 1:39 pm

Veema & Didge

Thank you for your feedback as it all helps. I have just spoken to a nurse from Oncology & she has said 'no' to creon. She is going to put an urgent call to the palliative care team for a home visit to review my medication & discuss my loss of appetite etc. I'm just so worried about everything at the moment. Like I said I have supportive family & friends but they don't fully understand how I'm feeling. X

PCUK Nurse Jeni
Posts: 1016
Joined: Mon Jun 14, 2010 1:30 pm

Re: Diagnosed in May 2017

Postby PCUK Nurse Jeni » Mon Dec 18, 2017 4:47 pm

Hello Tina,

Thanks for your posts and welcome to the forums.

Some great advice from the forum family so far - my colleague Rachel has emailed you regarding the use of creon etc.... If you have any questions after this, please do not hesitate to contact us.

Kind regards,

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

Veema
Posts: 498
Joined: Mon Feb 02, 2015 5:35 pm

Re: Diagnosed in May 2017

Postby Veema » Mon Dec 18, 2017 9:39 pm

Well, you can only go with what your medics say...I still think you should be taking them if you have a tumour in the head of the pancreas, but that's obviously just my opinion...Im sorry if my post was a bit forthright.

I hope the palliative care team can do something for the loss of appetite, but I do think this is something that is common in PC sufferers, my husband was told little and often and just eat what he fancied.

Vx

Dandygal76
Posts: 746
Joined: Sat Mar 12, 2016 9:49 am

Re: Diagnosed in May 2017

Postby Dandygal76 » Tue Dec 19, 2017 9:13 am

There is not much else I can add to this other than my dads tumour was in the tail of the pancreas but he had Creon and could not cope without it. I don't really know why you can't just try it and see - there is no adverse harm in trying. x

Tina1963
Posts: 7
Joined: Mon Dec 11, 2017 8:11 pm

Effects of radiotherapy treatment

Postby Tina1963 » Sat Dec 23, 2017 12:28 pm

Hi. I was diagnosed in May this year with pancreatic cancer. I underwent 3 months of chemotherapy which was once a fortnight. I finished this back in August. I have just recently had 5 days of intense radiotherapy which has completely wiped me out. I keep getting really bad bloating to my stomach area from my breastbone to my belly button. If I press lightly down the middle it's pretty painful. Has anyone else experienced this? If yes how long is it likely to last for? My treatment only finished 10 days ago. I am now on a 7 day pain patch which actually appears to be working as regards to the pains from my pc. Any comments would be greatly appreciated. Thank you. Tina.

Tina1963
Posts: 7
Joined: Mon Dec 11, 2017 8:11 pm

Effects of radiotherapy treatment

Postby Tina1963 » Sat Dec 23, 2017 12:28 pm

Hi. I was diagnosed in May this year with pancreatic cancer. I underwent 3 months of chemotherapy which was once a fortnight. I finished this back in August. I have just recently had 5 days of intense radiotherapy which has completely wiped me out. I keep getting really bad bloating to my stomach area from my breastbone to my belly button. If I press lightly down the middle it's pretty painful. Has anyone else experienced this? If yes how long is it likely to last for? My treatment only finished 10 days ago. I am now on a 7 day pain patch which actually appears to be working as regards to the pains from my pc. Any comments would be greatly appreciated. Thank you. Tina.