A forum for advanced pancreatic cancer issues

Moderator: volmod

Forum rules
Please see the messages in our "Rules" section

The posts on this discussion board are made by members of the General Public and are not intended to constitute medical advice
cheshire_cat
Posts: 7
Joined: Sun Feb 13, 2011 7:12 pm

My amazing mum -- any advice/help?

Postby cheshire_cat » Sat May 28, 2011 9:16 am

My beautiful 65 year old mum was diagnosed with pancreatic cancer in January and had a Whipples operation in March. She has recovered really well from surgery and was due to start chemotherapy a couple of weeks ago. Devastatingly, however, her pre chemo scan (she was going into a trial) showed that she has small spots of cancer on her liver. They apparently must have been there at the time of the operation but were so microscopic they weren't spotted. It is the most awful shock -- even all the trial nurses are shocked. Mum has made such a good recovery from the operation, she looks really well and healthy, is eating totally normally, (as well as taking food supplements as she is still underweight -- despite putting on more than half a stone since the op) and has absolutely no symptoms from the cancer on her liver. The oncologist refused to give us a prognosis --- he just said it would be months but wouldn't predict how many. It just seems so incredible as she really is so well.

Mum has agreed to go into a different trial -- the one that has been in the news recently called Telovac -- and is due to start treatment next week. We don't know yet which arm of the trial she will be on. Can anyone tell me what to expect? I have been looking after mum full time since January when she was diagnosed -- I gave up my job -- and I simply cannot get my head around what has happened. We had so much hope and she seemed to be doing so incredibly well. I am crying a lot but mum seems just numb. She is totally able to get out and about and do things so we are going out every day to things like museums, galleries, cafes, walks, shopping etc as it is so much better to be occupied.

Can anyone give me any advice or at least tell me what to expect? Mum is my best friend, a part of me. I cannot bear the thought of her suffering. And I have no real idea of how long we actually have left. Could it be possible that mum has longer because her primary tumour has been removed? Does this make any difference? Again, we have no answer from the oncologist. He didn't even suggest the trial. I brought it up because I'd read about it. And he seemed reluctant for mum to go on it -- he gave the impression it was all a bit pointless and was unbearably negative. But I rang the specialist unit where mum had her surgery who were very positive about it and said it was definitely worth mum going onto.

Any advice, thoughts, well anything really, would be appreciated. This is just the most horrendous disease. Mum has already fought so hard and is still so very ready to fight.

AnneD
Posts: 58
Joined: Wed Feb 09, 2011 10:45 pm

Re: My amazing mum -- any advice/help?

Postby AnneD » Sat May 28, 2011 10:42 am

I'm sorry to hear about your poor mum.
It's a terrible shock when something like that happens especially as she was recovering so well from her Whipple's surgery.
I'm afraid I can't give any advice, only sympathise.
I had a Whipple's in December which was a completion pancreatectomy. I've been recovering well, too, but my CT scan in May has shown a nodule on the lung and I have another scan booked now to watch its progress.
If your mum is like me, you just want to keep busy to take your mind off it.
I have to keep going out or gardening or moving stuff around in the house - just can't settle down.
I hope someone comes on soon who can give you some advice.
Best wishes to you and your mum,
Anne.

PCUK Nurse Jeni
Posts: 1075
Joined: Mon Jun 14, 2010 1:30 pm

Re: My amazing mum -- any advice/help?

Postby PCUK Nurse Jeni » Tue May 31, 2011 11:01 am

Hi Cheshire cat,

Sorry to hear the news about your mum.
Please email me at the support@pancreatic cancer.org.uk email and I can explain things a bit better, and go over the trial with you.

Jeni.

laura
Posts: 385
Joined: Thu Jul 01, 2010 1:53 pm

Re: My amazing mum -- any advice/help?

Postby laura » Thu Jun 02, 2011 8:20 pm

hi there, hope things have progressed for you a little, oncologists just can't [usually] say how long things can go on everyone is so different, try to speak to a specialist oncology nurse they can explain a bit more to you, also contact the macmillan nurses they can liase for you with the specialists and your doctors and they are there for the whole family, my husband is on telvac trial GEMCAP since3 last june now on 12th month of chemo, hes doing quite good, though got cellulitus and chest infection at the moment, not poorly with it has rested today and gone bowling?? you will settle down your head will stop spinning and you will feel more positive about small things, the initial shock is so awful my husband was diagnosed feb 2010 went to hosp for whipple but tumour had invaded superior mesenther vein i relly didnt know how to cope or what to do,but really there is only one way, and thats to be there and do your best. thinking of you and love to your mum and you laura xxx