Folfirinox started on Wednesday and other stuff

[J_T]

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

[Cathy]

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

[LindaH]

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

[Cathy]

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

[J_T]

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

[Cathy]

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

[J_T]

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

[Cathy]

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

[PCUK Nurse Jeni]

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.

[J_T]

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

[karen17]

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!!!!

[AnneD]

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.

[Cathy]

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

[J_T]

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

[J_T]

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