Hello from KATB

[karen17]

I'm always checking posts Kate so feel free to fire questions anytime. Hope you get on ok at the oncology appointment.

Karen xx

[KATB]

Thanks Karen x

[DRAD3]

Hi Kate

So glad you are ready to be "upbeat" at the oncology meeting next week - I think we often let doctors take the lead and set the mood so, good on you, for being prepared to go in there with a pro-active and positive attitude! I am sure it will make a difference.

love

Deb

x

[KATB]

I hope so Deb - we are all managing pretty well at the moment. Everyone is quite upbeat, particularly as Dad is feeling better by the day it seems. He did another walk yesterday, watered the garden and supervised my brother doing some work on their garden wall. He does still have a nap but I think that's OK - I do that sometimes too if I can get away with it

He is definitely eating well and maintaining his weight and his wedding ring is no longer loose as it was a couple of weeks ago so that is encouraging too.

As well as looking at his bilirubin levels at the oncology meeting we will also hear what the CT scan showed up a couple of weeks ago - that part is making me slightly nervous but even if there is some spread FOLFIRINOX is indicated for metastatic disease and I've read of people with mets seeing reduction or disappearance of those, as well as their tumour, so I'll still be pushing for that and still feeling positive about it.

Kate

x

[KATB]

PICC line being inserted tomorrow. First FOLFIRINOX treatment next Wednesday.

Fingers crossed!

X

[PCUK Nurse Jeni]

Wonderful news!

Jeni.

[suef]

Dear Kate,

That's good news, keep positive!

Love,

SueF

[karen17]

Thats good news Kate. My husband looked at his scans yesterday. Liver scan pre folfirinox showed too many metasteses to count ( obviously why we kept being told quite a few! ) however after 6 cycles of "the good stuff" there are 4!

If the weather is not too good on wednesday tell dad to take gloves and a scarf with him as Bob felt immediate effects from going out into the cold with tingling hands, nose and feet. Some people get a choking sensation if they don't wrap their neck up. Bob finds if its under 8 degrees he gets these sensations. Hand and foot warmers that you can buy from Millets are just wonderful and a bargain at around £1.20.

Will be thinking of you. Stay strong and positive

Karen xx

[J_T]

Karen, thanks for the tips, that's useful information!

Good meeting today, the onc had a more positive demeanor which helps. We're just keeping everything crossed that this treatment is going to be successful and put the cancer in remission!

On we go!

[KATB]

Thanks Karen, that's really useful to know. It looks like the weather is warming up a bit but will definitely keep that in mind.

Kate

x

[KATB]

And thanks Jeni and Sue for your positive vibes - so much appreciated

x

[Catherine]

All the very best of luck for the treatment starting. Fingers crossed it does it's very worst and your dad isn't too poorly with it. Catherine x

[KATB]

Hi all,

Well dad started the Folfirinox yesterday.

The only immediate effect was from the irinotecan - he began to experience stomach cramps and a strange sensation in his throat which made his voice go a bit strange. They stopped it and started it again more slowly but he experienced the same side effect. He got through about 75% of it but had the full dose of everything else.

So far he seems to be OK, just tired. He's still got the pump on - that will be taken off tomorrow and, thank goodness, a district nurse can come and do that now so we won't need to drive to the hospital (40 mins away) just to have that little job done.

I'm expecting him to feel a bit knocked out for a couple of days and then possibly better by Monday. Anyone got a view on that?

Kate

x

[Cathy]

Hi Kate,

This is my first post on here but I've been reading posts for a little while. My partner was diagnosed with advanced PC just before Christmas 2012..

His only symptom pre diagnosis was some low level (but persistent) pain, controlled with paracetamol. He's a strapping 6ft 2 healthy 57 yr old (I'm 48). His diagnosis was devastating to us and even a huge shock to his consultant!.

Anyhow, we started on FOLFIRONOX at the beginning of Feb and have just had the 5th treatment after a 2 week break . Like your Dad, Jonathan had stomach cramps with the irinotecan and so now has a double dose of atropine painkiller(lucky him) and a slightly reduced dose of the drug and hasn't had a problem with that since. I think everyone is different with how they react to chemo but the first few days after generally are fine for Jonathan bar tingling and cold sensitivity which has resulted occasionally with chest cramps and breathlessness. We're hoping this will stop now the weather is (finally) warming up.

The biggest challenge has been fatigue and that for us tends to start about the 4th day after treatment and can last for 4-5 days. Generally it starts with a big dip and improves over the next few days. Jeni, from this site's support, has been extremely helpful and recommended coming off steroids more slowly and so we are now armed with extra steroids to experiment (from tomorrow). Your Dad may have a completely different experience however. The other side effects he's had is constipation (for the same period) and a sore mouth (helped by mouth washes and a lip salve).

He was able to come off pain killers completely after his 2nd chemo session. He has a great appetite and has put on 4-5kg in his break in chemo alone. He is officially overweight. His key worker can't believe it.

First scan shows no increase in the tumour and a decrease in tumour markers. So we are continuing with chemo going forwards with breaks built in.

One thing you might like to consider is having someone learn how to do some of the things the district nurses do. I now give Jonathan his injections (he is on a daily anti coagulant), flush his Picc line each week and can disconnect his chemo pump. All of this is to give us freedom outside the hospital appointments and (as the nurses come on a Friday) allow us a long weekend when we fancy.

Your Dad sounds like he is doing really well and I hope he continues to feel well after his first session. But, there is also a lot that can be done to help with any side effects as well if necessary if they do crop up.

All the best for the next few days.

Lots of love

Cath x

[Cathy]

Hi Kate

I forgot to mention something else you may find helpful... I kept a diary for the first few sessions of the side effects which really helped, firstly, as an aide memoir for when we next saw the oncologist, but also as a way of spotting patterns (eg fatigue normally happens X no days after chemo,). This really helps in planning ahead.

Hope that helps

Cath x

[J_T]

Cathy, that is useful, thank you.

I am Kate's mum

J_T (Julia)

[Cathy]

Hi Julia

I've just read your other post I'm sorry Ray is now feeling so poorly. Jonathan has been lucky as he has had no nausea at all - not sure if that's down to anti sickness pills or if it just doesn't affect him in that way. So I can't really offer any advice from our experiences but it would be worth telling the oncologist as they may be able to alter the drugs to mitigate that a bit.

I'm sure others here will be able to offer useful advice

Cath x

[PCUK Nurse Jeni]

Kate,

Did your dad have an Atropine injection prior to his irinotecan, or even when he got the effects? If not, he certainly needs it, so should not have a second dose without it.

He might be OK if he is on post-chemo steroids, but can "hit a brick wall" when they stop - keep an eye on this, ie; if he gets more tired and lacking in energy after the steroids stop (dexamethasone).

Kr,

Jeni.

[J_T]

Hi Jeni, he had what the nurse called a 'bee sting' injection, not sure what the actual drug was. This was at the start of the whole caboodle. When he had reaction to the ironotecan, the onc said he could have another as perhaps the first one was given too early. They stop the process for some minutes and slowed it down a bit when they restarted but he had a similar reaction so they stopped.

Julia

[KATB]

Mum maybe you need to ask next time if they are giving atropine - they could have just given him Piriton, we don't know!

K

x

[Cathy]

Hi

My parner now gets a double dose of atropine as exactly the same thing happened to him.

They also now give him the ironotecan over an hour rather than 1/2 hr at a slightly reduced dose. He hasn't had a problem with it since (althogh the injection does sting!).

Cath xx

[PCUK Nurse Jeni]

Good advice Kate. Not heard of the bee sting description before - I tended to tell people what I was giving and what it is for ! Possibly a more straightforward route? I know you might not remember all the names of drugs etc..., but you can write them down, then if you want to check anything, you have the name of it.

Yes, Kate, it could have been piriton - Julia, was it given intravenously, or into the tummy? If it was into the tummy, then possible that it was atropine.Yes, agree with Cath too - the Irinotecan can be given slower (this is the drug which causes the reaction). Should be really, if it continues to be a problem, in order for him to complete the dose.

Hope this helps,

Jeni.

[J_T]

No! In his arm!?

I think they did give him anti emetic through his PICC line before they started the chemo.

Julia