Bowel cancer treatment and side effects

kmw83

First post....emotional...Dexamethasone query

Hi all, this is my first ever post on this forum - I don’t really know where to start. After a large bowel resection I was diagnosed with dukes stage C bowel cancer at 34 years old. I’m currently on my second round of xelox (I think that’s it anyway) chemo. The first one was brutal but I perked up relatively quickly, enough to get married and have sufficient energy. However, this second round has really knocked me, especially on an emotional level. The thought of another 6 rounds of this is getting me down. I have Dexamethasone for three days after the infusion and just realised that I’ve continued taking them into day 4 - I am shattered but my legs would quite like to run around the block several times? Has anyone else expected experienced this? Thanks in advance and a big high five to all you fab folk who are taking on this shitty disease. Kate :x::x:

Liriodendron345

Hi @kmw83, I sympathise with you and as @Barbara suggests this is definitely one to talk to your team about. Everyone reacts differently but it I found it really reassuring when I found out that it is the reason
behind the physical and emotional crash after the two days that I am on it. I couldnt come off it as my nausea is only well controlled by Dexamethasone and other stuff, but knowing why it happens somehow makes it easier to deal with. Good luck, and let us know what your oncologist or specialist nurse say, Kim :x::x:

ch7091

Hi Kate, you could be me! Im also 34 with Dukes C. Im 4 cycles into chemo and have dropped my steroids. I couldnt sleep on them and then I was exhausted in the day. I also had an emotional crash when I stopped them, which took a while to bounce back from.

I would definitely ask about reducing the steroids, it's made a big difference to me.

Good luck, Jodie :x::x::x:

at2017

I accidentally halved my dose on my last round and felt so much better :x:

Terrish

Hi @kmw83 and welcome to our friendly club - not that you wanted to join, but now you are here make the most of it.

I did the same as @at2017 - completely forgot to take the second dose (or misread the instructions) so at the end of cycle 2 I had several spare. I realised I hadn't needed them for sickness and I could sleep better, so only ever took the morning ones and never the later doses.

I also whinged so much about the side effects my oncologist couldn't bear it and stopped the Oxaliplatin at the half way point as it made me feel so ill. It was like getting all your xmas and birthday presents at once - I skipped out of his office. I was worried that I hadn't got enough but as I carried on with the poxy oxy tablets I felt I got the best of both worlds :)

I remember feeling much worse after round 2 but on the positive side you are a quarter of the way through it.

Have a hug :x::x:

kmw83

Thanks all for your supportive and reassuring replies. It’s rubbish that we all have to go through this but, selfishly, it’s nice to know i’m Not on my own and someone understands. It’s really odd because the chemo team told me that the Dexamethasones (or Dexys Midnight Runners as my husband calls them) would give me energy for the first three days however I had zero energy levels, so I dread to think what I’d feel like without them. I guess it’s a case of trial and error. @Terrish I hadn’t thought of it that way - a quarter of the way through 👍🏻☺️. Thanks again all. Big hugs from me :x::x:

Gill

I 'accidentally' lose the last dose down the toilet..... Have them for three days post chemo. Can't sleep, eat like a horse and extremely irritable (ask Hubby!).

Terrish

@kmw83 - it's half a dozen of one, in that the steroids helps with sickness and give you an energy boost (apparently), but I was more knackered from lack of sleep so preferred to be lethargic all day and sleep better at night.

Did you have many lymph nodes affected? I have just looked up my diary and was definitely at my most down after the 2nd and 3rd cycles.

kmw83

I can 100% relate @Gill I’ve started eating anything and everything today! 🐷 xx

Quote from @Gill:
I 'accidentally' lose the last dose down the toilet..... Have them for three days post chemo. Can't sleep, eat like a horse and extremely irritable (ask Hubby!).

kmw83

You’re right @Terrish you can’t seem to win either way🤦🏻‍♀️. I had two lymph nodes out of 76 taken affected (apparently the 76 was a record for my colorectal surgeon lol). I keep meaning to start a diary - have you found it useful? :x::x:

DMR700

Hi @kmw83 I also get a crash on days 4 & 5 when I stop the dex, physically shattered but worse is the emotional crash! I feel utterly depressed for those 2 days. It helps slightly knowing that it’s caused by the steroids and not “real” but it’s the last thing we need to deal with! Might ask my onc about alternatives... :x::x:

Terrish

@kmw83 - The diary sort of helped! I wasn't very good at keeping it, in that sometimes I felt too bloody knackered to write in it, what with chemo brain (what day is it?!) but it did allow me to see where my side effects were getting worse and also that feeling shite until day 4 the first week, day 5 the second cycle etc was forming a pattern. I usually forgot to fill it in the third week when I felt fine and didn't want to think what was coming up...

I wrote down things like how long it took before I could drink water at room temperature after the poxy oxy or use my hands without gloves. When it got up to 10 days I whinged, and that's when my poor oncologist said I could stop. I suspect I was the bane of his life, firing off emails every time my hands curled up :)

scruffysheep

Really interested to read this post and all the comments as I too really suffer on day 5.

I have Folfox on Tuesday with a 5fu pump till Thursday and feel fine but by Sunday , and on the last cycle (no 8 )Saturday and Monday as well I can barely move due to exhaustion I have always put it down to the chemo itself it never occurred to me it might be the Dexamethasone causing it.
I have never felt sick at all during the chemo and as we are going to stay with friends for a few days when my next B****y Sunday is due I might forget to take them and see if it's any better.

WendySue

@kmw83 I had thought this was just my problem till reading these posts. Great name for them from your husband as Dexys Midnight Runners as that is exactly the effect! I also had a massive crash the day after they finished to the point of real psychological distress and my husband would remind me every time that I would be over it in a couple of days. Far worse than the side effects of the chemo for me but I was scared to not take as chemo unit advice they were needed.
:x::x:

Baxter2

Hi @kmw83 and welcome to the forum!

I'm sorry to read of your diagnosis at such a young age! Life can be so blooming unfair can't it?

I've had 42 cycles of Folfiri and Cetuximab and always have steroids for four days following infusions. I find them really helpful and in fact, sometimes plan more including horrible 'chores' around the house and garden, days out etc. for the days when I have them as I feel much more energetic.

I have chemo on a wed and always experience a 'steroid crash' on the Monday/Tuesday. I plan very little on these days preferring to stay at home. I can function and go out if I want to but struggle a fair bit. I guarantee to have a little cry on these days about something or nothing but know that come Wednesday, I'm much more like myself again! (Today! 👍) I've tried to reduce them before and stretch them out for longer but found I had awful fatigue for longer just after my chemo so take them as prescribed now. Fortunately, I never suffer from nausea so I'm lucky in that respect. It would be useful for you to discuss this with your oncologist as you may want to try reduction etc under their direction but it certainly didn't work for me.

Wishing you all the best!

K💚💛💜💙❤️

Polly 1

Hi @Baxter2 hubby is really suffering today. Like you he has his chemo on a Wednesday so today he usually starts to perk up but not this time.

He's not as tired as yesterday (he slept most of Sunday/Mon/Tues) but his face is really red, painful and sore and together with a painful mouth and tender nose he's really been down in the dumps today. There's even been a few tears and that's not like him at all.

He's just had cycle 18 Folfiri/Cetuximab. Should the skin reaction get better at all? Even Pliazon isnt helping much now and just stings. They are struggling with dressings on his PICC line as well. They have only got to touch him with Chloraprep and it reacts and stings so it's just saline now. They cut the IV3000 down to cover the smallest area they can get away with to allow Sobaderm to be used to calm down the rest.

He really is struggling this time. Hopefully tomorrow will be better - although as he keeps saying "and it all starts again next Wednesday" - it's not easy is it :x:

Baxter2

Aww, I'm sorry to hear your hubby is struggling @Polly 1

My skin reactions definitely got better with more cycles. I'd say by maybe cycle 20 onwards ? I don't tend to need to sleep either during the day but sometimes have 40 winks in the chair 😉.

Without sounding too intrusive, is he feeling a bit lower in mood than usual? If so, maybe a wee chat with the GP might be helpful? I take Mirtazepine antidepressants which I wouldn't dream of doing without now. I think we are dealing with so much on a daily basis that every bit of help we can get is a bonus!

Hope he starts to feel a bit brighter tomorrow.

Loads of love,

K💚💛💜💙❤️

Polly 1

Thank you @Baxter2 I just started a new topic as well to see what everybody thinks so thanks for your comments.
Definately down today - he's usually very upbeat but the pain is getting him down today. He thought last cycle was bad enough but this one is worse. It's all getting too much today - I will mention possible antidepressants/GP chat.
He had his quarterly CT scan last night and the Oncologist did suggest a break/reducing chemo once we know how things are going but we dont see him for another 4 weeks as it is taking that long to get the scan report.
I have taken photos of how bad his face has got as last time it calmed down a bit just in time for the next treatment
Thanks again and I hope all goes well with your cycle :x::x:

Baxter2

Hi @Polly 1

I hope he agrees to have a chat with the GP. Honestly, I noticed a huge improvement when I started taking the anti depressant meds and because of this, I asked for them to be gradually increased to the maximum. There's no doubt in my mind of their effectiveness and positive effect on my mood and outlook.

Where is his pain? Hopefully he can get something to address this too? Ongoing pain would get anyone down! I'm guessing he might be feeling more anxious than usual too awaiting the scan results as we all do!! I have my 3 month scan tomorrow but trying to keep my head firmly buried in the sand until I get the results!

Let me know how things go will you?

K💚💛💜💙❤️

1234annie
Quote from @kmw83:
You’re right @Terrish you can’t seem to win either way🤦🏻‍♀️. I had two lymph nodes out of 76 taken affected (apparently the 76 was a record for my colorectal surgeon lol). I keep meaning to start a diary - have you found it useful?

Wow!! I had 40 and thought that was a lot!! I was 35 diagnosis too, hang in there Kate. ❤ :x: :x: :x:

kdan

35 year old when diagnosed in Jan 2017. I cut the dex dose in half due to the mood swings etc. 100% helped. You'll find what works best for you. Best wishes