My Dad

[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

[LAURA81]

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

[Gill1301]

Dad's first session isn't until this afternoon. I am at work thinking about it constantly, probably making all sorts of mistakes too.
They gave Dad a nice new thermometer at the information session so Mum said she will make sure they check his temp daily (is that enough?)

Thanks once again for all the support xxx

[rachelqt]

Hi Steve and Gill

Really hope it all went smoothly for your Dad today. I know my dad and the family were so nervous on his first treatment, but thankfully it ended up a good experience.

Chat soon
Rachel x

[Steve983]

Dad had his first infusion of chemo yesterday afternoon at about 5pm and I'm pleased to report he has had no ill effects at all so far. He woke up this morning feeling the same as he had the previous morning and at the time of writing is feeling fine, I know there may be delayed reactions but this is better than I dared hope for.

The other good news is that since he's been taking the Creon his appetite has improved and he is looking forward to meal times again (like he always used to!). He also gained some weight last week so lets hope he can gain even more now. (It's funny, Dad's been overweight all his life and we've always been trying to get him to eat less - now we're practically force feeding him custard donuts!)

Thanks again for all the support here. It's true to say I think that if we hadn't known about the the things to ask for, like the Ensure drinks and the Creon we wouldn't have been offered them - or at least it would have taken longer to get them. It's a great comfort to know what we are doing all we can for him!

[PCUK Nurse Jeni]

Hi Steve and Gill,

Good news that your dad is coping well so far with chemo. Long may that last. Good that he is enjoying food again, and putting weight on.

Gill, regarding the temperature, once a day is ok, but also, if he is feeling unwell at all, the first thing to do would be to check his temperature. Careful also that he does not take paracetamol without checking his temperature first, and letting the chemo unit know. Paracetamol is a very good pain killer, and safe to use as directed, but it also lowers a temperature. This can mask any signs of what is going on in the body ie: underlying infection. The temperature will settle, but the cause of it will not.

You may like to have a look at the following link: http://www.pancreaticcancer.org.uk/info ... emotherapy

Some of the information may be old hat now for your dad, but it will still help to give a better understanding of chemo. Also, http://www.pancreaticcancer.org.uk/info ... -questions
This gives some of the frequently asked questions when someone is undergoing chemo.
Hope you find it helpful.

Jeni.

[laura]

hello steve and gill, lovely to hear that dads ok from 1st chemo, its great to get it overwith isnt it, and realize its not always so terrible, tho i realize some peoples experiences are very differant, any way good for dad and keep feeding the doughnuts. love laura xx