Topic: Hello

Hey all,

My name is Ilias, I live in Melbourne, Australia and my mother who just recently turned 70 was diagnosed with pancreatic cancer July 13 2012 (Friday 13th).  Mum had a whipples on 21 July 2012 and recovered quite well.  She was in hospital for about 4 weeks and then readmitted for a further 2 weeks due to an ecoli infection.

Before she was diagnosed, I thought cancer was cancer.  However, reading and researching this cancer shocked me and the rest of my family.  The doctor said it was a cancer you didn't want to get, but looking at the scans she was most likely a candidate for surgery.  The doctor outlined most patients when diagnosed are too advanced and surgery was not an option.

Long story short, she had her appointment with Dr Zimet (oncologist) of Epworth in Richmond.  He was happy with her recovery and told us that he had a plan and hope for recovery.  He told us that her case was investigated for some weeks before they came up with a conclusion that the cancer was bile duct cancer. He said it was still bad, but not as bad as pancreatic cancer.  We were told her staging was stage iib.  The cancer had spread to the pancreas and some nearby lymph nodes.

His plan was to put her on 5FU daily through a picc??? and offer radiation through Dr Pat Bowden at Epworth for 6 weeks.  He then said she would go on a course of gemzar after the 5FU.

Before coming to work this morning, I stopped by my mums to see how she was.  She has started her treatment and is heading into her 3rd week.  The treatment seems to be hitting her really hard.  The doctors and nurses told us that the 5FU is gentle and the radiation would be the main factor contributing to the fatigue and nausea.

As I am writing this, my hands are shaking and I am finding it hard to breathe.  I cannot clear my mind of this day and night.  I do find comfort through my wife, children, father and this forum.  I don't want to exclude anybody from this post, but I would love to hear from those patients and caregivers who are in a similar situation.

Cheers and love to all.

Ilias

Re: Hello

Dear Ilias, welcome to our extraordinary family but sorry you had to find us. As you probably know by now the Whipple is the biggest surgery to a human body. NOT life threatening but huge. It take months to heal and get your energy back then add to that the chemo your Mom has started and its no wonder she is "zapped". My husband, Teddy, had his Whipple at the age of 73. He also had a bad ecoli infection but his was before the surgery. After surgery 5 Doctors said chemo would not help him so he had no chemo. The surgery did buy him another 5 1/2 years. The CC returned after 3 years and was where his Duodenum used to be. He had radiation to bring it down from 7CM to 5CM then had Cyber Knife which to us was a miracle. I assume the chemo is because of the mets she has to other places.
I know this is hard to take, no doubt about it, it is a real monster, however at least the ONCS have game plans for your mom and that is good news. There  is one important thing you can do....you must be VERY strong because the stronger you are the better you can handle what ever comes up. If Mom is having side effects from the chemo the Onc should be called because there are so many things they can give her to get through the side effects. You have come to the right place and we are all here for you. Please keep us updated on Mom as we truly care.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Hello

Oh Lainy...I have nearly read every single post you have placed on this forum..You are truly a wonderful person and care for each individual that cries for help.

We are lucky that my bros in law is a GP and his best buddy is Pat Bowden.  So getting the right meds is a little easier.  Mum is now taking Zofron (i think that is how it may be pronounced).  She was also diagnosed with an irregular heart beat after the whipples and is on medication for that too.

Nurses also call mum daily to see how she is.

Take care and I will continue to update

Re: Hello

Oh, thank you, Ilias, you are too kind but the truth of the matter is that this Foundation/Board started right after Teddy's Whipple and this Board got me through his 5 years after. Honestly I get more back than I give here, I am just addicted to it!
I look forward to your updates, especially to tell us that Mom is doing good. You never know how strong you are until "strong" is the only choice you have!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Hello

Hey all,

Mum is going in for scans today.  She is in a lot of pain around the stomach region and the oncologist seems to think there may be a blockage or obstruction.  I am not too sure what all this means, but I guess we will find out later today.

In addition to that, I think the side affects of 5FU are kicking in.  Her lips are dry and occasionally bleed. 

I also wanted to ask whether anybody suffers from thick saliva.  Mum continously says she has thick saliva.

Anyway, will keep you posted.

Cheers
Ilias

Re: Hello

ilias, sorry to hear Mum had to go in today for Scans but it is the best and only way to see what is going on. I have not heard of the thick saliva but if you go to our search button at the top of the page and type in "thick saliva" IF there are any posts on that they will appear. Hoping they find what is causing Mum's pain and please keep us posted.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Hello

Ilias...Biotene makes an artificial saliva product.  I believe it comes in spray form also.  Several of our members have found relieve with mouth moisturizers and I hope for their input on this issue also. 

In the meantime know that I am thinking of you and your Mom and that I am sending a tidal wave of good wishes her way.  Please keep us posted…we care.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Hello

Thanks so much.  Will keep you posted...Cheers Ilias

Re: Hello

Hey all

Mum's scans have come back and the oncologist has confirmed no obstruction.  I guess this is good news.

Anyway, due to the amount of weight mum has lost, the oncologist has prescribed steroids/cortisone.  As I work and find it difficult to be present with her at all appointments, I do not know why she has been prescribed this medication.  I take it that it might give her more of an apetite???  They have also reduced the amount of 5FU due to the sores on her lips and ulcers in her mouth and on her tongue.   

Both mum and dad are Greek and find it difficult to understand fully.  I will be taking her to her next appointment on Monday.  I will keep you all posted.

Cheers
Ilias

Re: Hello

Hey all
I don't know if it is the steroids or the lower dose of 5 Fu, but you would think mum never had this disease. She is feeling the best she has ever felt since she was diagnosed

Take Care
Ilias

Re: Hello

Ilias...fantastic news.  Is she also increasing her food intake?  Keep the good news coming.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Hello

Dear Ilias, what good news to wake up to this side of the World!  We will take the "good" and just enjoy it! Best of luck on Monday with Mum's Doctor appointment and please do keep us posted.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Hello

At the Epworth in Richmond now. Dr Zimet wants mum to have a CT. Her tumor markers are elevated. Mum only had a CT last week and all good. Do tumor markers normally increase for no reason. Has this happened to anybody else? 

So confused.

Ilias

Re: Hello

Ilias,

I hope your mom is feeling better.  I totally understand what you and your mom are going thru.
My 72 year old mom was diagnosed one year ago.  She too went through 6 weeks of radiation.  While receiving radiation, she received Gemzar chemotherapy once a week.  After radiation was completed, she continued to receive Gemzar for 5 more months.  Originally it was scheduled for total of 6 months of Gemzar, but because it was so hard on her body, my mom decided to stop the chemo one month early.  I guess it depends on the individual how much they can tolerate chemotherapy. But it was very tough on my mom.
But, I must tell you, there is hope.  My mom was not able to receive surgery because the location of the tumor, too close to the portal vein.  But, by the grace of God, her PET scan one month ago showed no activity where the tumor is, therefore, MD states she responded to the treatments well.
She goes for another scan in 3 months. We continue to pray that she remains stable, that the tumor does not return.
It's very hard to see your mom in pain,  I very much know what you're going through and so do all of the wonderful people on this site.
I hope your mom responds to the treatments, keep praying. I know it sounds cliche, but prayer works.

Anna

Anna

Re: Hello

Hi Anna

Thanks for your encouraging message. Yes. I agree it is so hard to see your loved ones go through so much. Take care and I hope you and your mum have continued success.

Ilias

Re: Hello

Ilias....is it possible to ask the doctor why another CT scan had been ordered so soon? 
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Hello

Hi Marion

Hope you are well. Dr Zimet was a little concerned that her CA 19-9 test results have gone up. Like I said the scans looked good last week, can't believe that somethi g in her could grow so quickly if there was nothing there last week. I asked if a CT was the same as a PET and he said that both would show if something were to there.

Ilias

Re: Hello

Ilias...how soon will you hear of the results?

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Hello

Hi Marion

Still waiting for receptionist to book CT and Zimet will not see her till Friday

Ilias

Re: Hello

Ilias...fingers are crossed for your Mom on this side of the world.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Hello

Hey all

My brother called and is with my mum at the onc.  A new growth seems to have appeared.  5FU and radiation stopped and a new chemotherapy will be started (platinum based???)

I am really beside myself now and feel that this is the beginning of the end

Cheers
Ilias

Re: Hello

Hi Ilias,

I am sorry to hear of your Mom's new growth. My daughter, Lauren has been on two of the platinum based chemos at different times. She was first on Cisplatin in combination with Gemzar and 5-FU. She is now on Oxaliplatin with Xeloda (the pill form of 5-FU). She has had positive results with both. Please do not give up hope because one chemo or radiation stopped working. This happens to many people. Lauren's oncologist always tells us that chemo is cumulative and the longer you take one, the worse it will make you feel. So now your Mom is starting a new one and it might help her feel better. Believe me, I know it is easier to fall into the pit of worry, depression, and being all doom and gloom, but it is so much better to remain on top of all this with hope, optimism, and enjoying every moment with your Mom. Take care and hoping for the best.

Love, -Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Hello

Ilias- I just wanted to say welcome to this amazing support group. I sadly don't have a positive story to share. My mother n law was diagnosed on Sept 5 w/ Inoperable, stage 4 CC. She is 66 y.o. She just finished her 3rd round of Oxilplatin/5fu intravenously, but it is now being placed on hold due to her increase in pain, an occluded bile duct, and elevated labs.
This has been a very hard thing to watch. I am more and more sad as the days go by because for our family, I feel this is definitely the beginning of the end. But this is my experience. Many people on this board have survived years with this cancer. Every person's body reacts to chemotherapy very differently.  There are definitely commonalities from story to story, but the the story themselves are very individual.
I want you to know that you are not alone. I am so so sorry that you and your family are having to go through this.

Please keep us posted and I am sending good prayers and thoughts your way!

Lindsy

Re: Hello

Pam & Lindsy. Thanks for all your thoughts and kindness.  Mum is being admitted into hospital next MOnday to start her new regime of cisplatin and gemzar. 

Keep you all posted.

Cheers
Ilias

Re: Hello

Dear Ilias, just wanted to wish Mum the best on her new chemo cocktail, which seems to be a very popular cocktail.  Ilias, don't feel the news is the beginning of the end, it may be just a new beginning! Be strong!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.