Folfirinox started on Wednesday and other stuff

Of course!

You said that that is what KATB stood for.. doh!

I'll follow you. I don't tweet much myself but I'm good at following

Cathyxx

Great news Julia and Kate! Glad to hear Dad/Ray is doing ok after round 2!

The small irritation around the neck and throat will be from Oxaliplatin - don't give him any cold drinks, and keep his neck wrapped up, especially when going out in our (beautiful - not!) May weather!!

Have a great weekend - Cathy, great about the steroids doing the job with longer course!

Jeni.

Cathy, we have matching photos on Twitter! LOL!

I post lots of random rubbish so I do apologise!

Kate

x

I know!! I spotted that!!

I'm also a regular runner. More for keep fit/keep the flab at bay reasons than anything else.

I'm more than happy getting random twitter rubbish - I don't tweet much myself but I'll apologise in advance for any drunken ones that might slip out...

Cathy xx

Hi Julia and Kate

How is Ray/Dad this weekend?

Cathy xx

Hi Cathy, thanks for asking.

I'm cautiously saying very good! He had the treatment on Thursday instead of Wednesday so had the pump removed yesterday. He had one episode of retching at 10 to one this morning but that's it so far (touches all things wood!). He's been eating okay and drinking about 1.5l (sorry Jeni, not the 2.5l suggested!). He's been out of bed and walking around, although more tired today - could be due to interrupted sleep as well I suppose.

All this is in complete contrast to his first cycle so things are quite positive at the mo!

Hope Jonathan is doing okay also?

Julia x

Hi Cathy, Kate and Julia,

Glad to hear that Ray is feeling a bit better following the chemo. I had to laugh at the story of the ride on lawnmower! Have not yet read your new thread Cathy but hope that Jonathons ok.

Thanks for posting re the guy on cycle 42 of folfirinox. That is just amazing and gives us all some hope. I'm not on twitter but guess I could try. Tend to stick to facebook.

We are off to Spain on wednesday - prescription sun block at the ready! As luck would have it Bob has been getting some diarrhoea and seeing as he had chemo again last thursday I guess it may make it worse. Packed lots of loperamide too! When we get back he has his last cycle then full scan on the 30th.

Keep strong ladies

Karen xxx

Have a fabulous break Karen and Bob, could do with a bit of sunshine myself!

Hope the diarrhoea clears up pronto! 'See' you when you get back!

Julia x

Hi all

Well that sounds great about Ray. In our limited experience I would say that when Jonathan starts off well he tends to continue to be well - he thinks he can tell now how he will be. He still has his "dips" but any side effect is lessened. Here's hoping for you all as well.

Karen, have a fabulous time. We see the oncologist tomorrow so I will find out how we can fit in our holiday around the chemo. At the moment we still have this in our sights all being well. I hope Bob's diarrhoea clears up in time for your flights. A holiday will do you both the power of good I am sure

Kate... Just reread my last post to you. When I said "I spotted that" I meant about our similar photos rather than your posting "random rubbish"

Thank you for asking about Jonathan. He has been pretty good - we've spoiled ourselves by eating out the last 2 nights.. and now has started taking the p** out of me by randomly announcing he has a bad back and then laughing at my expression .

Just as well I'm nice...... !!

Speak to you when you get back Karen.. You must let us know how you got on with your suntan lotion and Picc line cover (if you bought one)

Cathy xx

LOL Cathy - I knew that's what you meant!

K

x

Ray has been really tired today and needed to sleep quite a bit. Also feels a bit light headed and this he felt yesterday just a little.

I'm wondering if this might be related to coming off the steroids? He takes 8mg dexamethasone all at once for 3 days after therapy so yesterday was first day without. I think I will mention it at the meeting on Wednesday as Cathy's Jonathan seems to benefit from coming off more slowly?

Other than this he has tolerated the Folfirinox very well indeed this time

Julia

Hi Julia

That sound so encouraging!! In fact fantastic!!!

Jonathan says that he feels "spaced out" with the chemo which seems to go hand in hand with fatigue. Steroids help with the fatigue a lot and coming off the steroids more slowly has worked a treat. Jonathan still gets what he calls "dips" where he feels really fatigued but NOTHING like before. It's made a huge amount of difference to us. We are seriously planning our holiday now

Btw... We had our visit to the oncologist today, Jonathan's platelets are just below what is normal so needs another blood test before his chemo on Weds,, however white blood cells are good. And his blood tumour markers are a TENTH of what they had been at their highest. So we are chuffed to bits

Also the oncologist (different guy this time) thinks back pain was down to muscular spasm. He gave him a little check over and said he seems fine but call if it happens again.

Onwards and upwards for all of us I think?

Cathy xx

Hi Cathy,

Just read your post and really felt the need to comment saying how positive everything sounds for Jonathan.

It's good to see news like this as I know it can help ...well it does me....others also feel positive. Each step is a move in the right direction and long may it continue to do so.

Linda x

Hi Linda

Thank you very much.

That's very nice of you to say and, yes indeed, long may it continue to do so for us all!

Hope you are doing well as well.

Cathy xx

Not such a good day today for Ray but still overall much better than last time. We will definitely mention the steroids when we see the onc at our next appointment.

Really hoping Jonathan's bloods are A-OK for next round and blooming marvellous news about the tumour markers, no wonder you are chuffed!!!

Keep on keeping on!

Julia x

Hi Julia

Hope Ray has perked up today a bit. It's very good he feels better than last time. What a relief!! And now you know that he won't always feel so poorly as the first time and hopefully find ways of managing the side effects (like asking about the steroids).

Well, Jonathan is in having chemo today so his blood test results were ok. It occurred to me it might be his anti-coagulent injections that have caused it so asked the hospital if he should stop but they said not - not sure why not (but I'm clearly no expert).

When we saw the (different) oncologist on Monday we mentioned that Jonathan, every Friday following chemo, has a brief period (a few seconds) where he might struggle to breath - brought on by the cold and a known side effect of the 5-FU. It doesn't bother him that much as he knows what causes it but he's being given another drug today to counteract that as an experiment. Much to his annoyance I might add as he wanted to get home in time to watch the Europa cup final! I think he is about to stomp off and ask them to experiment next time instead.

Football eh?

Cathy xx

Hi Cathy, so glad all went ahead and everything okay. I thought the cold/breathing problems were from the Oxilaplatin? :easily confused:

Ray still very tired this morning so Kate and me went to the onc meeting without him. They are going to reduce the Oxilaplatin dose, which they had still given him at full dose last time. They have also agreed to bring him off the steroids more gradually next time so we'll see how that works - fingers crossed!

He has improved during the day so hopefully we are now on the upward curve!

Best wishes to all

Julia x

Hi Julia

Not been on here for a couple of days - it's been a bit mad! I work full time and after Jonathan's diagnosis there have been days where I've been doing 2 full time jobs.

Yes, I think you're right re the Oxaliplatin now I've checked. I'd assumed it was the 5-FU as it always happened the day it finished.

How's Ray now?

Jonathan's chemo took about 6 hrs this time as they gave him another drug (sorry, not sure what the name is) to counteract the tingling and the laryngeal spasm. Early days yet to say if it has worked yet although he was able to hold his pint glass without wearing a glove that evening (this is true).

We're away this weekend so may not get a chance to post again until next week.

Hope you all have a great weekend!

Cathy xx

Cathy/Julia,

You are correct - it is brought on by the oxaliplatin - basically the same thing which occurs in the tips of fingers and toes can occur in the larynx.

Jeni.

Updating Ray's progress on cycle 3.

Just to mention he got a sore throat on cycle 2 and cold sores. The Mac nurse thought it was thrush and got us some Nystan and that with Difflam seemed to do the trick.

Cold sores still in evidence but calmer and haven't flared up this time, also no sore throat. All in all much better again. Really quite well until day 6, its always day 6! Although he'd been given extra steroids he still dipped, but even that wasn't as awful. He did feel low on Day 7 - a day he felt like quitting - for a minute, until we talked about knowing this feeling doesn't last and of course today, day 8 he feels better again

The dip does last 2/3 days and we're beginning to see a pattern which helps. He not been sick or had diarrhoea so that's good. Appetite and has been good throughout too.

He's done a faecal elastase test but we haven't had the results yet.

Bitter Melon Juice remains untouched I told him I would get him the tablets instead - he doesn't seem keen on those either!

Hope everyone is doing well.

Julia xxx

I've not heard of a faecal elastase test. Whats one of those? Plus the bitter melon? Honestly ladies I've got back from our hols and feel very confused with your chats of bitter melon, bathrooms and all Kate's research papers to read!!!!

Hello Karen,

Elastase is an enzyme produced in the pancreas.

It isn't broken down in the intestine so it remains in the faeces.

A sample of faeces can be tested to see how much elastase it contains ( just a "pea-sized" sample ).

Low levels of faecal elastase indicate that the pancreas is not producing enough enzymes.

Supplemental enzymes can than be given in the form of capsules ( eg Creon ) to aid digestion.

Hope this helps,

Anne.

Our bitter melon also remains refrigerated and untouched. I'm working from home tomorrow which will give me far more opportunity to remind "him indoors" that he might quite like to GIVE IT A GO given he's paid for it. I mentioned pills and he looked at me like I was mad. Now Karen's reminded me of our bathroom conversation maybe I am.

Julia - what a relief it must be that Ray is tolerating it so much better from the first time. Interesting re his dip. Ours was generally day 4 after steroids stopped and he also felt as it it wouldn;t end and needs reminding that it always has done. We'll need to find a clever way of using them now with the blood sugar issue.

Xx

come to think of it, fatigue lasts about 4/5 days not 2/3 unfortunately! (its my age )

Cycle 4 postponed till next week. Something minor with the bloods re liver function. Asked how he'd been so I told them he'd been light-headed and had fallen in the week and was tired. Discussions were had and onc decided on the whole to postpone, Ray wasn't arguing lol.

No point sweating it, if the man from Del Monte says 'no' what can you do?

Glucose test added to bloods next week, no result yet from faecal elastase test and onc is convinced Ray doesn't need Creon - we'll see.

Might as well make the most of the nice weather