topic Re: Recently diagnosed with Pancreatic Cancer in I've just been diagnosed

Recently diagnosed with Pancreatic Cancer

MrD — Tue, 28 May 2019 14:41:54 GMT

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

Re: Recently diagnosed with Pancreatic Cancer

kj — Wed, 29 May 2019 01:26:02 GMT

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.

Re: Recently diagnosed with Pancreatic Cancer

MrD — Wed, 29 May 2019 12:33:43 GMT

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

Re: Recently diagnosed with Pancreatic Cancer

kj — Wed, 29 May 2019 22:16:45 GMT

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.

Re: Recently diagnosed with Pancreatic Cancer

MrD — Thu, 30 May 2019 15:06:08 GMT

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.

Re: Recently diagnosed with Pancreatic Cancer

kj — Thu, 30 May 2019 23:04:34 GMT

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.

Re: Recently diagnosed with Pancreatic Cancer

MrD — Wed, 05 Jun 2019 23:00:19 GMT

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

Re: Recently diagnosed with Pancreatic Cancer

kj — Wed, 05 Jun 2019 23:35:32 GMT

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.

Re: Recently diagnosed with Pancreatic Cancer

kj — Sat, 29 Jun 2019 07:38:40 GMT

Hi Malcolm

How are You feeling during your chemo treatment.

Re: Recently diagnosed with Pancreatic Cancer

MrD — Mon, 01 Jul 2019 03:44:34 GMT

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

Re: Recently diagnosed with Pancreatic Cancer

kj — Mon, 01 Jul 2019 08:42:27 GMT

Malcolm

Sorry to read about your time spent in hospital with an infection and becoming depressed,glad you have family support when it’s needed, depression can definitely rear it’s ugly head at any time.

Good luck at oncologist Wednesday I hope you are well enough for next round of treatment,it seems to occur during treatments unfortunately.where the body needs extra time to recover.

Re: Recently diagnosed with Pancreatic Cancer

looker_labs — Thu, 11 Jul 2019 10:55:22 GMT

Sounds seroius

Have they discussed whipple procedure with you?

That does not involve the liver and you have to take care of that.

I'm trying to keep myself in shape because I want to be on the list

for a liver (i'm type 0+ and that's 25% of being compatible - or more - with any for tissue typing

that antibody antigen)

With 'spots' on my liver that are now just a shimmer now on ultrasound,

I can tell you no drinking and clean living - I still smoke, but no bacon

white starch OMG!

Re: Recently diagnosed with Pancreatic Cancer

MrD — Sun, 14 Jul 2019 02:26:49 GMT

Hi there

They did discuss the Whipple procedure prior to me starting chemo, hopefully the treatment will shrink the tumor enough for them to remove it. It sounds like its an intense operation.

Haha...I'm missing bacon too!

Re: Recently diagnosed with Pancreatic Cancer

PhilPepper — Sun, 14 Jul 2019 03:45:02 GMT

Hi Malcolm

I only recently received confirmation that chemo is needed, a few days ago. It's getting more real every day, but I am still recently out of surgery, so still about 5 weeks away.

Yet to meet my oncologist. A lot of grey area around the whole thing so far. I will keep following you to see how you go. I'm keen to hear more about your highs and lows. Hopefully to fill in more of my blanks.

All the best...

Phil

Re: Recently diagnosed with Pancreatic Cancer

MrD — Sun, 14 Jul 2019 04:50:11 GMT

Hi Phil
It became real for me when chemo started, first couple of sessions were fine, not knowing the unknown can be quite intimidating. I've learned that the chemo is doing its job albeit making you unwell to become well.
I'm on a high protein diet as I've lost 20kgs since diagnoses, they like you to maintain a certain weight when having chemo, lost 3kgs in between sessions last week due to being unwell and losing appetite.

I hope your recovery from surgery is a quick one Phil and i too would be interested in your progress.

Regards Malcolm

Re: Recently diagnosed with Pancreatic Cancer

PhilPepper — Wed, 07 Aug 2019 13:46:30 GMT

Hi Malcolm

How is progress ?

I started my chemo today. It sucks balls and hasn't even been 24hours.

I've actually been good at recovering weight since surgery. I started at 93 and back to 91, but I haven't recovered it as muscle. Still we need fat too. I'm just trying to keep moving and extend my exercise daily.

Now with chemo starting, another life adjustment. I'm keen to keep exercise frequent to fight fatigue and weight loss.

I hope you are doing well. Hang in there.

Cheers

Phil