Our Cancer Journey 1st June, 2015

[JLO]

It was the 1st of June when I received an emotional phone call from my mother in law saying a cyst had been discovered in her pancreas. That night we went to RPA for further CT scans. On the night of the 2nd of June she was given the diagnosis of pancreatic cancer. The last three weeks have been an overload of information, several tests and scans. Her chemotherapy treatment is scheduled to commence on the 24.6.15. As a family we are very grateful for the medical team that is assisting her with her care and treatment from the RPA hospital. We are extremely appreciative of the state of the art facilities that are available to us from the Chris O'Brien Lifehouse. This amazing man has left a legacy behind that is certainly going to benefit thousands of cancer suffers and their families for generations to come. Welcome to our cancer journey. We are remaining positive, calm and hopeful. Onwards and forwards I say!. Sandra Lopes

[dick]

Gday Sandra and welcome to our little group, have they told you that the cancer is nets or carcinoid yet.

[JLO]

HI Dick, They haven't told us yet whether its nets or carcinoid yet?. We are seeing the oncologist again next Wednesday. I will ask him. Thank you.

[kj]

Hi Sandra Has the oncologist spoken about what Chemo treatment will be used and Also what the CA 19.9 tumor markers numbers are.

[dick]

if it turns out to be neuroendocrine we have a brilliant support group on facebook in the unicorn foundation. this group have given me the information that have now led me to Melbourne for treatment.

[JLO]

I have just looked through our paperwork: Type of cancer mum has is: Pancreas Metastatic Her chemo is: Folfirinox (modified) (Fluuoracil, Leucivorin Irinotecan Oxaliplatin) She is doing the chemo for eight weeks, followed by radiation, then chemo again. Have no idea what the tumor markers are? I have so many questions for our oncologist on Wednesday. Please let me know if you have further information on the above. I am refusing to google information on the internet, they warned us at our first chemo information session yesterday not to google any information and just stick to cancer council website as it is reputable. We are still in shock, we only found out she had cancer on the 2nd June 2015. Thanks Sandra

[JLO]

Sounds great. I have just posted more information about mum's type of cancer. I just dont know if it is neuroendocrine ????

[dick]

it does not sound like nets as that drug is different. I am 3 years plus now since diagnosis and having a whipples. the most valuable thing is a positive attitude. I hope it all goes well.

[kj]

It is a terrible shock to be given a Cancer diagnosis. Can I suggest to take a written set of questions for the oncologist if you have not already thought of it I know when i was diagnosed it was hard for myself and the family to remember and ask the right questions. CA19.9 markers are a blood test to measure the levels of PC in the body it can be used in conjunction with CT scans to see if the tumor is shrinking.It is the first thing I ask when visiting my oncologist what are my markers Folfironox is used when the Cancer has metastisized to other parts of the body it is a strong Chemo which can produce encouraging results it can have side effects which i am sure the oncologist will explain fully,one tip I can pass on is to try a mouthwash of Bicarb of soda regularly to prevent mouth ulcers. You are wise not to google at the moment ,you will have information overload,I know it is easy for me to say but just try and take it one day at a time. Hope some of this info helps. kj

[JLO]

Thank you. We are all remaining positive, her spirits are well..... We are taking it day by day X

[JLO]

Thank you for your help..... It has been information overload and its taking time to process it all. I will write a set of questions for the oncologist ready for next Wednesday. The cancer has metastasized to a main vein already which we are disappointed about. We are taking it day by day. She started with bicarb soda and warm water after every meal and morning and night too. Your advice has been spot on thank you....... we had a chemo information session yesterday and they shared the same information that you are telling me. Please feel free to post any information on this page for me. its so helpful to hear tips from people like you. Thank you kindly Xxxx

[totoro]

So very sorry about your Mum. It's one hell of a ride isn't it, cancer certainly has a mind of its own! Staying positive is the only way to go, it keeps you buffered and boyant for your Mum. It's sounds like your two are close and this will be a real asset to you both during those days when you need it most! My Dad has metastatic pancreatic adenocarcinoma. To begin with they thought his primary was in his liver, but it turned out to be his pancreas, sadly it's inoperable and chemo has been helpful in controlling the growth of the tumours. Like your Mum he also has the cancer around a major blood vessel ( abdominal aorta), he's had lots of leg swelling from this, so tell your Mum to keep those toes wiggling and ankle circling when ever she thinks too, to help with the circulation to her legs! All the best.

[JLO]

Thank you Totoro...... Mum has also been diagnosed with metastatic pancreatic adenocarcinoma..... We are commencing chemo on WEd the 24.6.15. Thanks for this tips to keep her toes wiggling, I will pass on this valuable information on to her tomorrow. All the best with your dad. We will certainly keep him in our prayers. It is one scary ride, we are remaining positive and calm and taking it day by day. When was your dad diagnosed with his cancer? I will keep you updated on her progress. Love and prayers to you and your family Xxxx