English newcomer

Hello Nica,
The tip of my port actually bent and I had it taken out, I will get another one put in when I need chemo. I have learned to only let the infusion nurses access the port where I receive treatmtent. Blood was not drawn from my port. Nica-I hope you will like your port. Sincerely, Johanna

Nica, my first port didn

I have been through 2 resections,and different chemos since 2007. I feel fortunate since it does not affect me with nausea,fatigue or prevent me from living my life. I had a “port” put in only 3 weeks ago. I refused at first,but gave in. Only to find out sometimes it only works one way. They could not draw blood. Ouch! I am pretty much “veinless”. Had to have it replaced Monday because the tube to my vein was too short and was coming out of my neck. Has anyone else had this problem? or the one way problem?

Nica

Cindy Very interested in your post. I am the dad Katja referred to. As she mentioned I was on the capecitebane arm of the trial last year. Two year scan due in August at St James’s Leeds.

Your question about cc coming back will be uppermost in your mind right now – but one thing I have realised is that you should be very grateful for your meeting with your astute doctor – getting to ‘first base early’ seems to be a universal point in any favourable outcome with cc or any other carcinoma.

As for moving on and putting it behind you …. I was / am able to get to what I called an “I’m ok today – and that’s what counts”.

I think I would say yes you can move on – I have just got back from a break in the Lakes with a walk over Catbells on a gloriously sunny day – I really thought days like that were behind me when I was in your position last year.

Do keep us informed of your progress and your position on the Bilcap trial. If you are on the capecitebane arm we would be more than happy to give you all the info you need.

Like Kate, I hope you are recovering well. We have found the network of oncologists and the treatment in the UK for cc to be perhaps a little more focused without the concern for second opinions or searches for centres of excellence – and of course we don’t have insurance or financial worries as an additional concern.

Just a word of support too for Helen Moremont and AMMF in the UK. She is a real champion of the search for some answers. I was so pleased to ge able to raise some funds for them – more details google ‘justgiving malcolm robinson’

My tip for using this board – start on the Good News / What’s Working page. That and the ‘power of cindy’ is just what you need right now.

Malcolm

Hello Cindy, and welcome to our wonderful family, but sorry you had to join us.
My husband had a Whipple in August of 05 and the CC returned 3 years later. He then had cyber knife and it was all good for another 2 years. With CC being so rare the only thing we know is that we don’t know that much yet, but we are working on it. Once you are pronounced “clear” here in the U.S.A. you usually need to follow up with visits to the Oncologist about every 3 -4 months. The best thing you can do is to think positive and live your life every day as nromal as you can. Attitude plays a large role in staying well. Best wishes to you and please keep us posted in how you are doing. We love the success stories!

Hi Cindy:

My husband Tom had a successful resection in June ’08 with clean margins, noradiation or chemo and he presented with a new inoperable tumor 18 months later. He then had 28 rounds of radiation followed by oral chemo (Xleoda) and then IV chemo (Gemzar and Cisplatin). In Dec ’09 he was given 6 months to live and he is still here and doing rather well. He does have an external drain bag to drain the bile so he’s not so yellow.

Prayers and a positive attitude.

Go with God and KEEP KICKIN’ THAT cancer!

Margaret