Recently diagnosed with Pancreatic Cancer

[MrD]

Hi there, I've recently been diagnosed with pancreatic cancer . Investigations have been going since end of March.

I was first diagnosed as having pancreatitis, further investigations and after being jaundice it was found that bile duct was blocked, stent was fitted..great things started to get better. 

About 2 weeks later the stent got an

infection, i thought it was my last day, the pain was intense. A new metal stent replaced the plastic stent, after 6 days in hospital i went home...yay!

A week later i was fitted with an infusaport and had laparoscopy. Now I've been told that I also have cirrhosis of the liver.

I'm meeting Oncologist tomorrow to discuss chemo before having Whipple surgery, can anyone offer any advice or share their experience with me, what to expect with the chemo and the surgery and how it's changed your life, thanks. Malcolm

[kj]

Hi Malcolm

The last time I spoke with my oncologist she told me that having chemo before a Whipple surgery helps the patient with recovery during chemo, as opposed to after surgery,it can also can help shrink tumors before surgery for a better outcome.Like yourself I had a stent before a Whipple,after surgery it takes awhile to get used to food again,the more  you are up and moving the the quicker the recovery will be it takes awhile to get used to the new plumbing after surgery, pain should be covered with meds,my surgeon said they are always improving on techniques my surgery was years ago.Chemo can effect everyone differently so have an open mind and see what side effects if any occur,good luck with your surgery.

[MrD]

Hi kj

Thanks for your reply. I've read a lot since being diagnosed and its great to hear from someone who has experienced what I'm about to.

I met the Oncologist today, he confirmed that I'm Stage 3, however, during the PETscan a lymph node on the neck was picked up and that it was mildly infected , a biopsy couldn't be done as its in a vulnerable position. The Oncologist said that its not a problem but if it was i would be Stage 4, its good news in a way but I'm still concerned.

You're right about having chemo before surgery, hopefully it will shrink the tumor enough. I also had some other good news today, I also have Crohns disease, the chemo will help that as well.

I start chemo next Wed, I'm pleased that I've finally got a date to beat this.

Kj, how long was your recovery time and what sort of impact, if any, did this have on your lifestyle. I understand about the replumbing etc and you have to retrain everything...time and being in a postive frame of mind helps too i guess.

Thanks for your well wishes and time in replying, also great to hear from a survivor.

Malcolm

[kj]

Hi Malcolm 

My recovery from  Surgery to up and doing things like going camping without heavy lifting was around three months,but I would say it took up to twelve months before I felt really  reasonable,finding the right food for my body took some time .I feel pretty good now with an occasional off day,it was slow improvement for me in the beginning,but a friend was back at the gym in three months, we all recover differently, I just took it one day at a time ,chemo did knock me around and yes it helps to try and stay positive.I am back to a reasonably active lifestyle,it took quite awhile to get there but patience paid off.I am  doing what I was before surgery, just a touch modified.I was at the hospital Rehab  recently for sciatica ,where the physiotherapist explained they have a program for people who have had a Whipple to help with their recovery,that wasn’t around during my recovery,so that’s a definite positive.Good luck with Chemo you will have your off days but in the end hopefully,you will have more good days than off ones.

kj

[MrD]

Thanks kj, I appreciate your time. I've had an emotional day today, everything seemed too hard, am I over thinking stuff, its always on my mind and it sometimes depresses me.

[kj]

Hi Malcolm

I think  that what you are  going through is  a normal part of the diagnosis of pc ,people may say that you have to stay positive ,but Its just not possible to be positive all the time,I found meditation helped me,depression can come as well,don’t hesitate to talk with your GP about what’s happening to you and your thoughts if you haven’t already .I know it’s hard to get your mind on other things,but if you are able try and focus on getting your mind and body prepared for the chemo and Whipple by walking if possible ,or very gentle exercise it will help later on with recovery,it is a very very difficult time in your life ,but you may be surprised what strength lies inside of you.Try and take it one day at a time for me that was very important.

How can you not be emotional at times we all have different feelings and concerns about the future.

[MrD]

Hi kj

Just a quick message to let you know i had my first session of chemo today.

I woke feeling ok, as the day progressed I became more anxious.

I arrived at the clinic not knowing what to expect and a bit apprehensive.

All the staff were so compassionate, friendly and made the whole experience a positive one. Not what i was expecting.

I came home feeling super tired and I know things can change but there is nothing to be scared of, everything that happens from now is purely for my well being.

Thanks for your support.

Malcolm

[kj]

Hi Malcolm 

Thats good to read how your chemo went,well done,I was told to drink plenty of water as  it helps to flush your body.

kj

[kj]

Hi Malcolm

How are You feeling during your chemo treatment.

[MrD]

Hi kj

Nice to hear from you.

I was going really well after the third treatment until last Monday, i ended up in hospital with an infection. Spent the whole week in hospital, apart from being unwell , I became depressed as the chemo transformation (hair loss and looking ill) has stolen my identity and I was struggling to accept it. My family was there to support me and help me, but no one really knows how you feel unless you've experienced it.

It's a new week, the oral antibiotics have helped, my white cells are up so feeling a lot better at the moment. I visit the Oncologist this Wednesday and then start the second round of treatment, if all is well.

Thanks for your concerns and support kj.

Malcolm