cathdw1

[cathdw1]

Hi everyone hope you are all doing ok , i'm not too bad at the moment , 20 months in now and still fighting this horrific cancer , would be nice to hear from you all and see how you all are x x x

[Miki8]

Hi Cath... I don't know if you remember me.. Have not been on in quite some time... I don't remember how to get to the regular page where we all just talk...

[Miki8 in reply to Miki8]

Ok Cath..I set up a new fb page to talk to you guys... I sent a request to join the group..just waiting for someone to accept me

[cathdw1]

Hi Mike , hope you are doing ok , have you joined Familys in support of pancreatic cancer awareness , ? that is the site we all talk on , if its not that one , then look it up and ask to join x x x

[auspete]

Hi Cath. My diagnosis was similar to yours - adenacarcinoma in the head of the pancreas but inoperative as it surrounds the SMA. Prognosis was dire but that was in Jan 2007. I have ongoing chemo which as you know is purely palliative as there is no cure (apart from surgery) for pancreatic cancer. But good news is after 6 years, I still enjoy a good quality of life. I am involved with some interesting research at the moment that hopefully will lead to a better understanding of this insidious disease. Happy to answer any questions.

[cathdw1]

Hi Pete thanks for your reply , so glad you have reached the 6 year mark , i have had no chemo this year due to a chemo overload , i was in and out of hospital so much after 12 months of continued chemo , all sorts of problems which was down to the chemo so i have had to give my body a rest from it . I had a scan in feb and again at the end of April and the tumour was still the same size , my tumour is on the ucinate process the bit that curls round under the head, I dont kow if you have read my story which is on the patients stories on here . I try to stay positive but i have some bad days . I reviewed a book for Mcmillan on pancreatic cancer and had to fill a form in on line on finishing it , it was very interesting and would be an ideal book for people just diagnosed , as you know it is the worst news , with hardly any imformation given . I became very ill in April and had to have a stent fitted , i got a septic bile infection , it took me about 4 weeks to feel a bit better , as the stent settled from pain it gave me . Do you get digestive problems and bowel problems , i have just upted the dose of creon to try to improve this , If you learn anything new on the research i would be happy to hear it .Take care and hope you carry on the way you are doing x x

[auspete in reply to cathdw1]

I do have digestive and bowel problems and after years of monitoring I still can't identify any clear causes or patterns. Creon is our best friend but make sure you use the 40,000 units. It should be taken with meals (not before or after) and remember the enzymes are only active for about 30 minutes so if you have having a lengthy meal, you may have to "double up". Smaller dosages (eg 25,000) can be taken with snacks.

Cath, I could not find your patient story but I will look again later. Take care x

[kennymorris]

kennymorris

After having the whipples op in march 2010 the cancer retuned in feb 2012 and I have been having chemo chemcitebine since may 2012. I have had a break to let my body recover a bit for the last 4 weeks. The last scan showed everything is stable and I am due another scan 5th July but know one knows what effect the break from the chemo will have on the cancer. I am having all the same problems as you guys with the bowel and the lack of energy being the worse. I know it is hard to keep going but we must keep fighting this horrible cancer.

[cathdw1 in reply to kennymorris]

Hi Kenny so sorry your cancer as returned , it never gives us a break does it , i also worry about what the cancer is doing while not on chemo , i was getting so ill with continuous chemo though , and my oncologist said it takes 6 months to get out of your system , i go to see her in August so will see what she says then about more chemo , my cancer markers went up at my last visit so i worry it may be spreading , although my scan in april showed not much change in the tumour . You are right though we have to keep going and fighting , energy levels are not good for me either , you take care and good luck with the scan x x

[kennymorris]

Cathdw

Just a quick one since you have been off the chemo has your pain got any worse or have you increased your pain killers. I am seeing the doctor tomorrow and I have a scan date on the 10th July, don't know if I am starting back on the chemo tomorrow or after the scan. I' keep you up dated

[cathdw1]

Hi Kenny , i do get a bit more pain but not enough to up my painkillers , my digestion as got worse though , hope your doctors visit went ok , let me know how you get on with things , had a bad couple of days so not been on line since Saturday .x

[kennymorris]

Cathdw

How are you feeling, hope you are feeling better. Decided with the doctor that I will give the treatment a rest until after the scan on 10th july and see what the outcome of that is worrying times but I am feeling a bit better for not having the treatment. I do hope you are feeling better keep your chin up mate and please keep in touch.

Kenny

[cathdw1]

Hi Kenny , maybe for the best giving your body a rest , chemo takes its toll , hope and pray the scan comes with good news for you , i am not too bad , feeling a bit better ....one day at a time is my motto , every day can be different .

It is always a worry for us after a scan , i get myself quite distressed running up to results and somehow go onto auto pilot , its a hard journey but the fight goes on .

Take care Cath x