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tintin1970
Posts: 4
Joined: Wed Sep 09, 2015 10:53 pm

Dads case

Postby tintin1970 » Wed Oct 28, 2015 11:40 pm

well as posted previously dad has myloe fibrosis(failed stem cell transplant 3 yrs ago) and now advanced pancreatic cancer with a tumour >6cm to body and tail told by the doctors at the beginning of September he only had a few months, he was offered Gemcitabine 3wk 1 off as palliative care, he is now on toward the end of his second cycle, he appears to be doing quite well at this point he blood counts seem fairly good for him, he seems to be coping well with the chemo complained last night of his stomach feel red hot and a burning sensation and redness to the hands is this typical I don't know, but apart from that he seems to be better now than he has been in a long time, his appetite seems to have improved and his weightloss seems to have slowed, which I'm not surprise by he seems to crave chocolate all the time and even when he cant eat he will manage a bit of chocolate and will take the high protein drinks, he also just gone back on creon which seem to be helping, just wondered if this is the calm before the storm. I every ones different but at the same time don't want to get my hopes up if this is temporary and just the effects of the morphine/chemo/creon giving him a boost

Sueoliver
Posts: 519
Joined: Thu May 22, 2014 8:22 pm

Re: Dads case

Postby Sueoliver » Tue Nov 03, 2015 7:28 am

Hi I don't think anyone knows what will happen in the PC journey! There are so many twists and turns! My Mum is still here 17 months later and does have some quality of life. She also loves chocolate she is always eating it. The creon definitely helps and they need to take it!
I know it is hard not to focus on what is going to happen but enjoy the good times together it is all we can do.
Take care,
Sue x

Marieb
Posts: 65
Joined: Sat Jun 20, 2015 6:35 pm

Re: Dads case

Postby Marieb » Tue Nov 03, 2015 11:49 pm

Hi Tintin

Just picking up on a couple of your questions, all I can offer is my own experience.

I was diagnosed mid June, I have Locally a Advanced PC and my tumour was 9cm (now 8 yeah hah). I have been given a year but to hell with that, none of us are statistics so who knows what lies ahead and what discoveries will come along while we battle.

The redness/burning in palms and feet is a common side effect of the chemo, I think it relates to one drug in particular. As long as it doesn't blister it's nothing to be concerned about although irritating.

As soon as I started the Creon I found a massive difference in my general well being, my appetite although not great is much better and my weight has been stable for 2 months now. I think that is also the chemo doing its work. I find the steriods I get during and after chemo perk up my appetite too.

I am on morphine patches (37 mgs) and this makes life far more manageable.

Is it temporary, are you getting your hopes up? Who knows...but I tend to agree with Sue, enjoy the improvement and try not to think too much. I have large very quickly to make the very most of each good day as there are lots that are bad and will leave him feeling very weak and ill.

I am not sure any of that helps...take care.

Marie X

PCUK Nurse Dianne
Posts: 299
Joined: Tue Aug 14, 2012 3:29 pm

Re: Dads case

Postby PCUK Nurse Dianne » Thu Nov 05, 2015 4:09 pm

Hi Tintin,

Hope you don't mind me offering some support. Also thank you Marie for bravely sharing your story and Sue for being positive. You are so correct in many ways, about the side effects of the Gemcitabine, and also statistics. We so often hear of people being given a prognosis of 'certain time' however are aware that with some good advice and management that their quality of life and prolonged life is often improved, and no one can definitely predict an individual's time frame, as we know we are all different and all respond in a different manner to treatment.

Tintin you mention that Dad has gone back on Creon, this is excellent, this does make such a difference in patient's quality of life, being able to have a normal meal and none of the side effects of bloating, bowel problems, indigestion and others. The important aspect is to be able to 'optimise' Dad's condition as much as possible so that he has gained some weight, has a little more energy, feels and looks better within himself - all of this will help to enable him to have treatment for a longer period of time. We so often find that patients are in their worst state at diagnosis, as they may have been unwell for some time, not had the information that will enable them to feel better, and given the right information, support and managing their symptoms does make a huge difference.

Of course we are not wanting to give false hope but be realistic, however great if Dad is feeling better and enjoy this time with him. It often helps to take 'small chunks of time' so concentrate on the week ahead and not too look or plan too far ahead, but small steps. I hope this is helpful and keep up the good work.

Dianne
Pancreatic Cancer Specialist Nurse
Pancreatic Cancer UK Support Team

tintin1970
Posts: 4
Joined: Wed Sep 09, 2015 10:53 pm

Re: Dads case

Postby tintin1970 » Sun Nov 15, 2015 11:33 pm

hi
thankyou all for your kind words advice and support.
Dad is still doing well on the chemo and is eating better. although if did lose a couple of pounds this week, he has even managed to work the last couple of weeks, which is his choice and seems to do him good. he still gets very tired but generally happier in him self.
fingers are crossed ,scan in a couple of weeks. Doctors are talking about adding a second chemo in with the germicide in the next cycle which he not sure about as he is worried about increased side affects.

sandraW
Posts: 1047
Joined: Thu Oct 31, 2013 5:38 pm

Re: Dads case

Postby sandraW » Mon Nov 16, 2015 1:29 pm

Hi, glad Dad is feeling a little better and good that he can work, I know how important it was for my husband Trevor and what a sense of achievement he got out of the normality of working, even though like your dad it did make him very tired. Lets hope the other drug does its job without the side effects being too bothersome, and that the scan results are good, take care sandrax x