No surgery yet

[MHWay]

Hi everyone,

I had the results of my scan after 5 treatments of Folfirinox on 21st Feb. my tumour had shrunk by 35% but not enough off the artery to operate.

I start on Thursday with 4more treatments then another scan. I've had a few weeks break as I got an infection in my portacath and had to have it removed.

I'm very optimistic and determined to get well and at the same time aware of the difficulties of this cancer.

I wish you all strength and send you positive thoughts.

I've found that since diagnosis I've had to look at all the positives in my life. It has helped me.

Lots of love to all of you.

Maz xxxc

[cathdw1]

Hi Maz , this sounds very promising, i know what you mean regarding this cancer, you cant let yourself get too enthusiastic , as we are all too aware what it entails , but i find positive thought helps a lot , not always possible as every day different. As myself when you are in this situation life and everything around you , you see in a different light , You take care and good luck , its something we all need ,Love to you and lets all stay strong for each other , Cath x x x

[MHWay]

Thanks Cath,

You are so right, everyday is different. For me the minute I was diagnosed I visited a different place. I now belong to a club that I would not have chosen myself but has chosen me to become a member.

All of life is more piquant and sometimes a bit manic. The highs are exaggerated and fortunately I have not hit any desperate lows. Maybe I'm not letting myself. However they may come and I guess I will deal with them if they do.

Having my portacath put back tomorrow then cycle 6 on Thursday. I also have 48 hours at home. So Thursday to Saturday.

Lots of love,

Maz xxx

[vanessareeves]

Hi Maz, keep strong and positive 35% reduction is a great achievment and I think positive mental attitiude has alot to do with how you cope in this situation , Cath who posted a reply is testament to this , she too is doing remarkably well.I wish you the best of luck with the next course of treatment and will keep everything crossed for you . Sending you lots of PMA. lots of love Nessy x

[MHWay in reply to vanessareeves]

Thanks Nessy,

A positive attitude has certainly helped me. Appreciate your support and good wishes.

Love to you and best wishes .

Maz xxx

[lorn1966]

Hi Maz,

This is my first post on this site so hope you don't mind me asking about the

Folfirinox that you are on. My sister got diagnosed with pancreatic cancer in October 2011. She started her chemo and did 3 cycles and then had a scan to see how things were going but 3 weeks ago she was told it wasn't working so as you can imagine we are all absolutely devastated. We live in the North of Scotland and as my brother lives in London he contacted Professor Cunningham who wrote a letter to my sisters oncologist suggesting the drug you are on. My sister has gone down hill very fast so we are not sure if she would be fit enough to go through more but it encouraged me when I saw your post about the Folfirnox. Did you have treatmnet prior to getting Folfirnox? I hope you dont mind me asking. Kind Regards Lorna

[MHWay in reply to lorn1966]

Hi Lorna,

I'm sorry to hear about your sister and I empathise with your worry for her. It is very difficult and distressing for the families of cancer patients.

I was diagnosed by a dr at barts hospital in London and was not happy with the proposed treatment plan. I did some research and found that a team at the royal free hospital in north London were using this new aggressive treatment for PC. Mr Kito Fusai is the surgeon and Dr Tim Meyer the oncologist. This treatment came into use May 2011 and is being used on the NHS.

My cancer is in the bile duct and the pancreatic duct. My problem is that it is around the hepatic artery. So inoperable for now.

I suppose you could ask your sisters Drs about an aggressive treatment depending on the circumstances of her condition. The success rate has increased quite considerably on the Fulferinox.

I wish you all well and send you love and courage.

Love

Maz x

[lorn1966 in reply to MHWay]

Hi Max,

Sadly my sister passed away tonight so as you can imagine my family are devastated. She had a very tough time this last 2-3 weeks so we feel she is at peace now although I just can't imagine my life without her at the moment. I hope your treatment continues to go well. Take care

love Lorna

X

[MHWay in reply to lorn1966]

Dearest Lorna and family,

My sincere sympathies for your sad loss. So sorry to hear the news.

I send you my love and thoughts.

Bless you all,

Maz xxxxxx

[lorn1966]

Thank you Maz for your lovely and kind comments which are very much appreciated. We are devastated at our very sad loss but hope and pray that yourself and all the other lovely people on this site continue to make progress in this dreadful illness. take care. Love Lorna XX

[lorn1966]

Hi Maz,

Just wondering how you are getting on with your treatment? I know we have lost my dear sister now to this dreadful disease but I like to come on to the site to see how everyone is getting on as I do care and hope that some of you will beat this disease.

Take care

Love Lorna X

[MHWay in reply to lorn1966]

Hi Lorna,

Thank you for thinking of us while you are going through a difficult time. I'm having my 7 th treatment this Thursday. I have 2 more after that then a scan.

The thing that bothers me the most is the pain I have around the pancreas area. I struggle to digest after meals and am constantly bloated and distended.

I am very positive and optimistic and well keep trying to move forward with each treatment.

I hope that you and your family are coping with your bereavement and you are in my thoughts and prayers.

Love,

Maz xxxxxxxx

[lorn1966]

Thanks for replying so quickly Maz. It is great you are being so positive, that is the best way to be. Do you take pain kilers for the pain you have round the pancreas area? Maybe speak to nurse when you get your chemo on Thursday and see what they say. I know my sister had discomfort in stomache etc but hers had spead to her ovaries and lungs so not sure where her actual pain was coming from. I am struggling with my sister's bereavement I must admit, everyone went back to work today but I just couldn't face it but will maybe try on Wednesday. It is just a thought to tell you the truth but know I will have to make an effort. Take care of yourself and hope your chemo goes well on Thursday. Will be thinking of you and all the other people who are going through chemo.. Love Lorna XX