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Posted

Hi
I am new to this site. I am from Sri Lanka and had the Classic Whipple done in late May 2021. The tumor was in the Head of the Pancreas. Now I am taking my 

Chemotherapy (3 out of 6 sessions completed) and I feel ok. I recovered from the surgery (had few minor infections from the surgery area, external) and that is no longer an issue. 

I was asked to take Creon 10000 with every meal and one question which I never got an acceptable answer was, whether the remaining part  of my Pancreas will ever perform its functions and do I have to depend on Creon for the rest of my life. I believe about 60% of the pancreas was re-attached. I already feel the effects of Creon. 

I am ready to share my experience I had within the last 3 months, from being a very normal person and the real drama I went through, leading up to the current state I am in.

Thank you

Posted

Thank you Thushan711.

 

I'm slightly behind you, but in a similar situation, I was just diagnosed with a 3cm tumour in the posterior head of the pancreas. I meet with the surgeon today to decide next steps, but it looks like they will want me to have chemotherapy first to shrink the tumour and hopefully get it away from the smv. Then I will have the Whipple procedure.

 

I'm super nervous about the Whipple, how I wll feel afterwards, how painful it is etc etc...

 

My understanding is that you will need the creon for the rest of your life. the head of the pancrease seems to be more involved in making digestive enzymes and for the tail it's more about the insulin response.

 

All the best!

Lx

Posted

@Thushan711 - welcome, and thank you for sharing your experiences. Glad to hear you're feeling okay on the chemotherapy, and that you're recovering well from your Whipple. Most people who undergo a Whipple's procedure will need to take pancreatic enzyme replacement therapy (like Creon) for the rest of their life, to make up for the reduction in pancreatic enzyme production caused by the cancer and surgery. You might find the information about Creon on our website helpful. 

 

I wanted to pop this information from our website here:

Quote

 

You might start with a dose of at least 50,000 or 75,000 units for a main meal, and 25,000 or 50,000 units for a snack or milky drink. For example, if you are taking a capsule that contains 25,000 units you might take two or three capsules with a main meal and one or two capsules with a snack.

This may sound like a lot of enzymes – but it’s not as much as your pancreas would normally make. During and after a small meal, your pancreas would normally make up to 720,000 units.

 

You mentioned you've been prescribed Creon 10,000 - if you're struggling with the amount of capsules you need to take on that dose, you may be able to ask to be prescribed Creon 25,000. If you have any questions about Creon, please feel free to email our specialist nurses who can give you further information.

 


@Lori - welcome - it sounds from other posts like you've been on quite a journey to reach your diagnosis. Thank you for sharing it here, I'm sure it will be really helpful to others who are in a similar situation.

 

It's understandable to feel nervous about surgery. Pancreatic Cancer UK runs a service called Side by Side, which can connect you to a volunteer who has already had pancreatic surgery so you can chat on the phone. They can answer some of your questions, share their experiences of the operation and recovery, and hopefully put your mind more at ease. If you're interested you can find out more here: www.pancreaticcancer.org.uk/sidebyside

 

The specialist nurses on our Support Line are also here for you if you have any questions after meeting your surgeon, or just need a listening ear. You can call 0808 801 0707 or email nurse@pancreaticcancer.org.uk.

 

Finally, I wanted to mention our online support sessions. There's one next Thursday (5th) at 1.30pm on Undergoing Surgery and Recovery that you might be interested in? The sessions are small and friendly, run on Zoom by one of our nurses. Find out more here: www.pancreaticcancer.org.uk/support-for-you/living-with-pancreatic-cancer-support-sessions.

 

All the best for your appointment today, Lori. Do keep us posted if you feel you'd like to. 

Posted

@PCUK Ellie
Thank you for providing this valuable information. My digestive process has become completely become normal and that could be a reason why my dietitian recommended a lower dose of Creon. From what I understood, even after some time, my pancreas will not perform its intended functions and use of Creon will be a long term thing. I will contact your team, should I require any additional information. Also, if required I can share my experience about the Whipple Surgery and things I did, which worked for me.
 

@Lori

Thank you for sharing your details and information about the pancreas. My surgery was done 2 months ago and that was the first time I have been warded or being operated. With regard to Whipples, I am sure you can handle that and I can share the following things I did which worked for me. 
 

1. Please learn to separate your mind from your body. You are not the best person to deal with what is going on inside your body. Have faith in your Doctors and medical staff and they will do what is needed. But take control of your mind and thoughts. Always maintain a positive attitude and take one day at a time. Without your knowledge, you will come out of this. 
 

2. Dont google too much and look for more info about Whipples. None of the postings give any valuable or positive advise. You and I are not a standard statistic or always have to go by some one else's experience. Take one day at a time.


3. Mobilize. After the surgery, Try to take 2-3 min or longer walks (at least 5-6 time for a day ) and this will help the blood circulation and your wound will heal much faster. After the surgery, you might feel some tightness in your abdomen and walking and other exercises done by the physiotherapist will reduce this faster and you will get over it. the more time you spend in the bed will delay the healing.

 

if you need to talk or need more info, I can provide my WhatsApp contact. Please let me know.
Good luck.

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