Folfirinox started on Wednesday and other stuff

[J_T]

Many thanks ladies for your input, its certainly made me feel a lot better.

Julia

[KATB]

I agree, those are very encouraging posts - thank you so much.

Kate

x

[Cathy]

Hi

We are all here for each other. There is so much you don't get told, what we need is a little book on how to cope, what to apply for and what to do. In reality I think we can just do our best and muddle through which is why this site and forum are so useful.

I agree with what you said Karen, I don't think a minute goes by when I don't pause and think about what has happened, and is happening, in our lives. Most of the time I feel strong and up for fighting tooth and nail but sometimes I unexpectedly get side swiped by the smallest thing and get low. Being practical and sorting stuff out has been the greatest therapy.

Kate and Julia - this is probably something I'm sure you will think of doing anyway, but a list the next time Ray goes in might help as there will be stuff you might need to take with you into hospital as well and things to remember to check or ask when there. We take in used syringes and his old chemo bottle for example (as well as a book, sandwiches, iPad etc - you should see the size of his bag!) and it prompts to check about the drugs when there.

Hope both the boys are doing well today (and your little boys Kate).

Cathy xx

[PCUK Nurse Jeni]

Ladies,

you are all doing a fantastic job supporting one another. Great to share the tips etc...

Yes, it is the little things you do not get told necessarily which you will find this forum useful for, and I can see this is the place to be for Irinotecan!!

Irinotecan is a quaint drug! Causes delayed diarrhoea more than 24 hours after administration, or at any time before the next cycle of the drug. This is why you are given loperamide, and an antibiotic (probably ciprofloxacin?). The diarrhoea can be more serious if the neutrophil levels drop, so be vigilant for a temperature (as you are anyhow). If the diarrhoea lasts more than 48 hours, you should contact the chemo unit to let them know. You may need to go into hospital.

The reaction caused immediately by the infusion is called cholinergic syndrome. Irinotecan is a medication that produce similar effects as the parasympathetic nervous system. So, you get diarrhoea, abdominal pain (cramps), watering eyes (tears), sore eyes, low blood pressure, chills, shivers, feeling unwell, dizziness, increased salivation. Most folks will get this. It is helped and relieved by giving atropine, and slowing down the infusion.

Hope this is useful?

Jeni.

[Cathy]

Hi Jeni

Thank you - it is. I'm assuming neutrophil relates to the immune system?

On an associated subject - now Jonathan's problems with taking the irinotecan on the day seem to have sorted out with taking it over a longer period his main dread about his chemo day now is the atropin shot (which he has in his arm and finds stings).

Today he has emailed from hospital to say that, this time, the nurse gave him the shot in his stomach and he said was MUCH better - far less painful. This might not work for others but would be worth trying if the arm is too stingy and we will definitely be adding that to our to-remember list for chemo days.

Cathyxx

[J_T]

Thanks Jeni, very informative as usual.

Ray has been feeling better over the last couple of days though still quite weak and weary.

We saw the onc today and we had a good meeting. We are going to get the irinotecan infused over 2 hours. The 'bee sting' injection IS atropine, I'll make sure he gets two! Onc seems to the think Ray's blip/hospitalisation last week was down to infection. There are no plans to insert another stent.

Ray is having another week off and hopefully he can continue on his upward curve, eat a bit more, exercise and bit more and be fitter for another blast of the bad stuff next week. If not, then they are happy to wait another week.

Ray's usual 'vague' pain that he's had since forever has been non-existent for quite a few days. He's not had to take Oramorph, though he tends to take some when he wakes in the middle of the night as a 'safety' dab! but none during the day. Onc said this COULD be due to tumour shrinkage. I asked if it would work that quick. He said, well its toxic stuff and drug of choice at present so could be. Of course that won't be confirmed until he has another CT scan but for now we're glad the pain has gone!

Thank you all for your continued input and support, its proving invaluable, mwah!

Julia

[karen17]

Hi Cathy,

Thats interesting regarding the atropine being given into the stomach. I will let Bob know and see if he wants to try it this way. He says that the injection is worse than anything else and describes it as someone slamming a concrete brick into his arm. They give him it as soon as we get there to stop him worrying. He marks the poor nurses out of 10 when they give it and I'm sure he's made some of them so nervous they shake when they give it!

[karen17]

Good to hear that Rays pain has gone Julia and the positive suggestion from your oncologist. Keep up the good work and get him fighting fit for next week xx

[Cathy]

Hiya

Yes, my big boy HATES the atropine injection - the rest of the day is a breeze so he was delighted to find a better way of taking it (I think it probably helps if you have a lot of flesh to inject!). The rest of his session went fine yesterday and we went out for a pint when we got home. He reports feeling great today.

Julia - we experienced very quickly a reduction in pain after chemo started (after session 1). No pain killers at all after session 2 other than taking them in preperation for the dreaded atropine injection. Although the recent CT scans didn't seem to show much change in size for us - overall we are told that all other signs are very positive and show that things are working as it seems they may be with Ray. Great news!

Cathyxx

[KATB]

Wow Cathy, that's very encouraging! I know my dad would be over the moon to have some pain free time ahead. He is hating having to take so much medication so a break from some of it would be fab for him - fingers crossed!

Kate

x

[Cathy]

Hi Kate

If your Dad's experience is anything like Jonathan's then I am sure that is something he can look forward to. Jonathan also hates taking loads of medication so is delighted not to need take them anymore (that and being pain free of course).

Fingers crossed that will happen very soon for your Dad. It sounds like it's already happening

Cathy xx

[KATB]

I have everything crossed.

Kate

x

[PCUK Nurse Jeni]

Hi All,

As a chemo nurse, I have only ever given atropine, prior to irinotecan, into the stomach.

Jeni.

[KATB]

Hi Jeni, is there any reason why injecting the atropine into the stomach is better than in the arm? We mentioned it to the nurse today when dad went for blood tests and she said they always do it in the arm and there's no reason to inject into the stomach. Obviously we had no answer to that!

Kate

[PCUK Nurse Jeni]

Hi Kate,

How funny?! They give it in the arm, and where I worked, we used the tummy!

The injection should be given sub-cutaneously, so just under the skin into the subcutaneous fat. This might be easier in the tummy, as the top of the arm is fairly muscular, and important that it does not go into the muscle - or it is too deep.

Sometimes, the technique is the answer to the person experiencing pain or not following an injection, and no doubt, some of the agents can sting when they are being injected.

Perhaps put the question to the consultant whether your dad can have it in his tummy, as he finds the arm painful? If they say this is fine, then there is no difference whatsoever in injecting into the arm or tummy - the same result applies. If this is better for your dad, then it should be fine to continue it. As a nurse, giving an injection into one place or another should not matter, as the same techniques should apply, and sometimes you have to rotate sites if they are becoming painful.

Jeni.

[KATB]

Thanks Jeni - I'll let mum know. Dad has gone for his 2nd FOLFIRINOX today.

Kate

[KATB]

Apparently he's had it in the arm but didn't find it a problem. They are doing the irinotecan first today.

[KATB]

Cathy and Karen - there's a guy in the US whose blog I've been reading (and I follow him on Twitter) - he's on round 42 of FOLFIRINOX! WOW!

Also, dad's been good over the last week. Still no pain, eating more normally, awake more in the day and sleeping better at night.

We had a lovely day on Tuesday - I was up visiting and it was glorious weather. We sat out most of the day and had an absolute hoot working out the new ride-on lawnmower! I was absolutely hysterical watching both mum and dad having a go on it!

Dad felt shattered after all that but the next morning said he felt a lot better for being out and about and doing some exercise.

All in all, I'm feeling more positive having seen how well he's been after the initial nastiness of the treatment and hoping that side effects can now be better managed in order to give him longer periods of feeling well in between treatments.

Hope you're all getting along OK?

Kate

x

[Cathy]

Hi Kate

Absolutely briliant - lovely news! I'm also glad your Dad's injection wasn't a problem. Maybe it varies from person to person but I know that Jonathan found it painful as it went into his muscle in his arm whereas he has a bit more flesh to spare in his tummy.

Are you allowed to give the twitter name of the guy you follow? I'm on twitter as well.

I haven't been able to post stuff on here for a few days as me and Jonathan went on a little "grand tour" for the weekend to visit both of our families and a friend of his. We got back yesterday. It was nice to get away and lovely to see the Lakes in sunshine.

Jeni's steroid "trick" seems to have worked again for Jonathan. His usual Sunday/Monday dip was much reduced and he does feel that he is far better able to cope with the chemo side effects now. He belives he is also tolerating the side effects more in himself as well - but, as I said, we have an arsenal of stuff now if he needs it now we know how he reacts to it. So, I think you should feel positive for your Dad and future treatments as well

I am going to write a seperate thread about Jonathan (in the advanced cancer forum) as I was a bit worried as he developed some back pain a couple of nights ago (and tummy pain). It wasn't severe enough for painkillers and it's pretty much gone now - this morning he reported that he had had it last night for about 10 seconds only when he lay down and was otherwise fine. In fact, my constant asking him how he is is far more irritating to him (he says). I've chatted to his keyworker who has put my mind at rest a bit but thought I'd start a new thread about it.

Keep us updated on how your Dad gets on this time around.

All the best

Cathy xx

[KATB]

Hi Cathy,

Glad you got a little break away - sounds fabulous!

It seems the irinotecan was infused without incident today although he did feel a bit unwell during oxaliplatin and they stopped it for a while. As far as I know, everything was administered as planned and, although feeling a little tired, dad is OK.

If you find me on Twitter, it's not difficult look through who I'm following and you'll find him. I'm not sure if I should post his name on here.

I just started following the Canadian charity and they just tweeted an interesting article:

http://www.prweb.com/releases/2013/5/prweb10711533.htm

Kate

x

[Cathy]

Hi Kate

Fingers crossed for your Dad this time and that he has an easier time of it. You might find it helpful to keep a diary for the first few cycles (if you haven't already). It helped us.

I think you might need to give me a clue how to find you on twitter (if you are allowed to). I did a quick search - maybe I'm being a bit dim

Thanks for the link. We can just hope for all of us.

Speak soon

Cathy xx

[KATB]

I've got the same name on Twitter as I have here

The diary is a great idea. I THINK mum is keeping one.

K

x

[Cathy]

Hi

Hmm. Well, I rather thought you might be.. there are a lot of you!

You're not in South Korea are you?

Cathy xx

[KATB]

@Kateandtheboys

x

[J_T]

Doing better than last time so far #earlydays!

Just gone for a lie down but up most of the day and eating and drinking quite well. A little tired and some small irritation round the neck/throat but a scarf seems to be doing the trick.