Diagnosed in May 2017

[Tina1963]

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]

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]

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]

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]

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]

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]

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]

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]

It was.

[Tina1963]

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]

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]

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]

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]

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]

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]

Any comments on my above post please?? As like you all just looking for some answers/help with my struggles.

Kind regards Tina. Xx

[Marmalade]

Hi Tina,

Sorry you are having some discomfort following your Radiotherapy. Sadly no one can't say how long the effects are likely to last with you as everyone reacts differently. I guess the nurses on here are away now until after the holiday but perhaps you can telephone the radiotherapy unit for some advice, or contact your GP or 101 to speak to a duty doctor if you are worried or the symptoms are not easing. It is ok for you to ring 101 and ask for advice, it is what they are for.

I hope this helps and that you are starting to feel a little better

Marmalade x

[Veema]

It's not something I'm familiar with...does the bloating ease or is your abdomen consistently swollen? I'd also ring the GP.

Vx

[Justamo]

Hello Tina.

Peter had 10 fractions of radiotherapy and within an hour of receiving the first treatment he was desperately sick. He had very severe radiation gastritis and one day they had to abandon treatment and rehydrate him via a drip.

He didn't complain of the kind of pain or bloating that you are describing, but he certainly had severe fatigue which took a month or so to ease. The treatment did seem to help the pain a bit, once the discomfort from the treatment itself abated, but sadly the PC pain seems to be coming back.

Did the hospital not give you a 24-hour contact number? Obviously not, or you would have used it. Our health board issue a card for patients undergoing treatment with a number to call in the event of problems within 6 weeks of treatment.

It sounds as though you need to talk to your GP as soon as the holiday period is over, meantime I hope the discomfort from the treatment eases. The fatigue certainly will.

Best wishes, Mo