My Dad

[Steve983]

Hello all, I'm new here and am very grateful for this site which has lots of information.

My Dad who is 76 has recently been diagnosed with PC and has been told it is inoperable because of the position on the pancreas. Although only diagnosed just before Xmas he had been going downhill for quite a few months with Doctors thinking he had diabetes at first and it was only in late November that a doctor got him in hospital for further tests confirming the problem. The only good news is that the cancer has not spread anywhere else and his liver is fine.

He has lost quite a lot of weight and his appetite too although he is eating fairly well.

Luckily he has no pain but sleeps a lot, feels weak a lot of the time and has become rather frail in the last couple of weeks.

I will be going with him to see the Oncologist for the first time next week but am worried that he is not strong enough to have chemo.

I'd be grateful if anyone here can give me some advice as to what questions to ask the Oncologist next week and what options we have before us. Thanks very much if you can help.

Steve

Edited January 4, 2012 by Steve983

[CFF]

Hi Steve,

Am very sorry to hear about your dad's diagnosis - welcome to the forum and I hope you find it a support. As you've said it is really good news that you dad's liver is clear. It is also good news that your dad is not in any pain.

You've got the right approach in going with your dad and doing some research before you go. I always made notes beforehand and in the meetings with oncologists, it can feel like 'precious' time to be in front of the 'expert'.

My experience of chemo has been slightly different - my dad was also diagnosed at 76 but was lucky enough to have the operation so chemo was offered afterwards. However many others on the forum have had experience of chemo and various drug trials when the operation hasn't been possible - so others may be best placed to offer advice on options.

However, it might be that they can get your dad strong enough to have chemo - my dad was very weak for a while and he had some steroids for a short period of time (short because they have other consequences) but this gave him more energy, time out of bed etc so he could improve leg strength. If the oncologist says chemo isn't an option now then ask if this is likely to change / how etc.

Re diet - there are drinks your dad can have that contain lots of nutrients and calories (Ensure) - your oncologist should be able to get a nutritionist to see your dad or at the very least give you and your family some advice on how to put extra calories to small amounts of food. Lots of PC patients lose alot of weight and it is very difficult to put it back on - eating little and often and 'sneaking' extra calories in when you can (cream / butter into mash etc) is helpful. If you dad has any problems with digestion or nausea now or in the future, there is also medication

available for this too.

It might also be important to ask about what symptoms to expect and how you should respond. One of the themes of many posts is the length of time it can take to get advice or tests etc. My own experience was generally positive - throughout my dad's 2 year journey (he passed away 3 months ago) I had either a mobile phone number or email address of his oncologist. This was invaluable when my dad started to be in pain, or we had further questions after appointments, or symptoms changed. Others haven't been so lucky. The point is I think is try to establish something similar with your dad's oncologist - with your dad's blessing of course - it gave us some sense of control and reassurance when things became difficult.

Finally, try to keep an open mind and stay positive. Everyone is very different and there have been some great celebrations of good news on this forum as well as the heart breaking stories. There were so many times when I saw my dad so low I thought that was it. And then he recovered. He passed away 3 months ago, 2 years from diagnosis. But we were lucky in many ways to have had that time.

Keep in touch - hope it goes well with the oncologist.

[rachelqt]

Hi Steve,

Im sorry about your dad having PC, I know how you feel as my dad is also inoperable (due to the tumor wrapped around a vein) and diagnosed in September.

If you have a look at my posts, I have one on 'First Meeting with an Oncologist'. You might find some of the replys given to me useful and give you an idea of what to expect. My dad was also very weak (out of breath going up the stairs) and eating little, he lost 3 stone. I thought he was too weak for Chemo but he actually was able for it and is now doing well (eating and having put on 9 pounds!). He has very little side effects and his tumor markers have been coming down. He is so much stronger than what he was in September/october. He will have a scan now after his 3rd month of chemo to see what is happening to the tumor.

This forum is very supportive, alot of brillant people on here to help or offer words of comfort if you need them!

Wishing you the best of luck with your meeting..Stay Positive!

Takecare.. Rachel x

[Steve983]

Thanks so much CFF and Rachel for all your words, you have both made me feel a lot more optimistic

I'll report back next week when we have more news.

[Nardobd]

Hi Steve and I'm sorry to hear about your Dad.

Pancreatic cancer UK have a whole section for the recently diagnosed...including questions to ask http://www.pancreaticcancer.org.uk/information-and-support/just-diagnosed/questions-to-ask There may be some you haven't thought of there.

Individuals react to chemo differently - my hubby, Ted, doesn't have severe side-effects but I know some others suffer terribly. There are different chemotherapies available, some more toxic than others and it may be that with the oncologist you can determine which might suit your Dad best.

Keep us updated.

Nicki

[Gill1301]

Hi I'm Steve 983's younger sister.

Have to say this forum is very uplifting and extremely comforting.

Thanks for the replies so far, as Steve said, very useful

[Nardobd]

Hi Gill and I hope that we can help you, Steve and your Dad along the way.

Nicki

[laura]

hi steve and gail,

my husband is 63 in feb[ and diagnosed 2 years in feb ]operated on but tumour wrapped around smv in pancreas, so some fiddling done and sewn back up, had 19 months of chemo, gemcap,and is currently on 3 month "holiday" from chemo, scan due in feb, also see our oncology team,[ we have had excellent treatment right through.]

bri lost 4 stone initially, but has over time put 2 stone back on.

a fair ammount of ensure in the beggining, homemade veggie soups etc, eat as and when, maybe smaller portions more often.?

have you got Creon ? this is an aid to digestion of food, so that your dad gets all the goodness from what he eats, if the pancreas is not working he will need these, he will not be able to overdose on them but you can under use them, bri can get through ten or 12 capsules a day, they may help with the weightloss and in turn his tiredness, but tiredness does go with the territory unfortunately, my hubby is fast asleep beside me now!! any questions just ask, someone will no doubt be able to offer some help, nice that you and gail have each other, support is so important, best wishes, laura, xx

have you got a macmillan nurse on board,? they help in so many ways liasing with your dads gp and team at hosp, there for you as well!

[Steve983]

Thank you Laura & Nicki too, lots of very helpful and encouraging tips there. I now feel prepared and will be armed with info and questions ready for the meeting with the Oncologist. I'm going over to see Dad now, going to get him to write down a full list of his symptoms - we don't want to miss any.

[Steve983]

I'm pleased to say the meeting with the Oncologist went quite well yesterday and we got to see the Dietician straight afterwards too who was very helpful.

On the plus side the doctor said that Dad was well enough for chemo but stressed that only a small % patients cancer shrinks after having the treatment, but lets hope we can stop it growing. Dad can start chemo soon with a first 'information' session then weekly infusions of Gembeticine (I think I got the spelling wrong there.) He's now having two bottles of Ensure Plus per day plus the dietician is sending another fish oil based drink too.

We really have to see now how he responds to the chemo and how bad he feels, he always has had a very strong constitution so that is a plus, he is also being remarkably positive about it too which is great.

Thanks to everyone for all your advice and information.

[laura]

hi both, glad the meeting was positive for you all, my husband is on gemcitabane infusion but also on capecitabine tablets, though hes on a 3 month "holiday" from chemo, having had 19months of treatment, we get a scan and review in february.

bris tumour had a shrinkage after 3 months and again after 2nd 3months, gets scanned every 12 weeks and things are static, so lets hope your dad gets good results, bri had very little, if any side effects, tiredness biggest problem but everything is copeable with, your dad will adjust to a new "normal" life, all the best laura x

[Steve983]

Thanks so much for your reply Laura, that is very encouraging, I wish you and your husband the very best of luck with your scan next month.

Thanks again

Steve

[Gill1301]

This forum is so good for morale, really makes a difference.

I know every patient responds differently to the treatments, but we are very hopeful.

Thanks so much for all the advice, it means so much to us all.

[rachelqt]

Hi Steve and Gill

Im delighted that things went well with the meeting and you have the go ahead with the treatment. I hope the next step of chemo goes well. My Dad is also on Gemcitabine (half hour infusion) and his side effects have been not too major, he has an anti-sickness every day to stop nausia and like Lauras Bri, its more tiredness that can get to him now and again. He now just takes it easy on these days! Although some days he feels that good and is so busy we kind of look at him and think 'do you really have this awful disease?'

Is your Dad having it once a week for 3 weeks and a week off?

Glad your both being so positive, I think its half the battle!

Talk soon and take care...Rachel

[Steve983]

Thanks Rachel for more positive vibes. We have been told its a half hour infusion too but that he will have it for every week for 7 weeks then one week off, I guess we'll find out more at the 'info' session.

Edited January 13, 2012 by Steve983

[lynbo]

Hi Steve

I think we may not live too far away, you can ask Jeni, the moderator - to put us in touch if you want?

I hope your dad respondes well to his chemo, positive thinking

Xxxx

[Pepper]

Hi Steve,

My dad also lost his appetite and lost a lot of weight so he tried a powder called MAXIJUL that you can add to food and drinks to give extra calories. My mum used to mix it in with his vanilla milkshakes. The doctor should be able to write a prescription for it and then the pharmacist might have to order it in as it's not widely known. Well it wasn't where I live. Also there's nutritional drinks called PROCAL that my dad was prescribed which he hated the taste of but it might be worth a try

[Steve983]

Thanks Laura81 for the names of the drinks & powders.

We now have a date next week for Dad's info session re the chemo, dont know how long we'll have to wait for the chemo itself, hopefully not another 2 weeks..

We were first given the bad news that Dad had 'likely' got PC on the 1st December, but it seems it will be February until he actually gets some chemo. Does it usually take this long?

[lynbo]

Hi

I would keep on at the hosp, as in my personal experience we waited too long and then it was too late as my husband was too ill to receive it.

thinking of you

xxxxxxx

[PCUK Nurse Jeni]

Hi Steve,

My name is Jeni, and I work as support manager for PCUK, and also in an NHS hospital.

This would not be considered long at all, to be honest. With a diagnosis on 1st December, and chemo starting in the next few weeks, this is a good pathway for a patient diagnosed with PC. Admittedly, it will seem like a long time when you are in the situation, but, it is quite quick really in NHS terms.

If your dad has a date next week for chemo info session, then he should be able to start within a week. We usually give out both appointments together, so the patient knows when they have the info session, and the first chemo. Often, they are on the same day anyhow, but I can't comment on other NHS trusts.

Hope this reassures you,

Jeni.

[Steve983]

Thanks for that Jeni ^

[Steve983]

Ok, we went to see the nurse for the info session today and we now have an appointment on Thurs for the first infusion itself. We are now told it will be a three week on, one week off course, on the fouth week Dad will see the Oncologist again to review progress. The nurse gave us lots of written information and numbers to call in case he feels really bad, she also warned us about the effect it could have on his immune system so I think we are as prepared as we can be now. Dad feels really up for it and positive which is a big plus.

I'm pleased to say we've also sorted Dad's prescriptions for Ensure and other health drinks plus the Creon too which he is now taking. Once again, many thanks to this site and all of you that have posted advice, it has been a HUGE help. Will report back next week.

Steve

[PCUK Nurse Jeni]

Hi Steve,

Great news! Pleased that your dad has an appointment to start chemo. It looks like he will be having Gemcitabine - once a week for 3 weeks, then a week off. (Or did they mention tablets also? These are every day).

It is good that you had the information appointment, as this helps to prepare a person for what lies ahead. Also good to have all the numbers you need. Regarding the immune system, no doubt they told you that you need to have a thermometer at home, in case your dad feels unwell? A high temperature will be a sign of the immune system being affected. Also to stress - no heroics!! If he is unwell, he lets them know straight away. You know what dad's are like!! "I'll be ok in the morning!" No, none of that please during chemo!!

Hope it all goes well for him anyhow.

Jeni.

[Nardobd]

Hi Steve

If your Dad is on gemcitabine, it may not be too bad - it all sounds very scary at first but some people, like Ted, have very few side effects. He had a bit of nausea and a little fatigue and a few other minor things like tingly fingers.

However, if your Dad should develop a fever (over 38 degrees) it's really important that you contact the chemo unit because that can be a sign of a more serious side effect.

Hope it all goes well and keep us updated

Nicki

[laura]

hi steve, well dads 1st session should be over by now, hope all went well for him and that he has as pleasant surroundings at clinic as we do at our centre,

bri really never noticed any side effects to speak of for several months, was tired on day of infusion and often went to bed when we got in, but even that was several months down the road, hope your dad will be as fortunate.

the very best to all of you, keep us updated,

just read nicki's post as i was submitting mine, i agree with all she says, { hi nicki you ok? x]

love laura xx