Cancer support thread 62 - here comes the sun (hopefully)

[WhatWouldLeslieKnopeDo]

Good evening

Our previous thread is here

If you've got cancer, this is the thread for you. Introduce yourself and feel free to ask any questions. We also welcome anyone who is waiting for cancer tests. We know how scary it can be. So don't be shy. We will happily hold your hand and hopefully wave goodbye when you get good news :)

That should be the 15th June not 25th

Oh chase sorry to hear that. It's tough when you're already going through all this shit. Take a few days to grieve and take things easy.
WWLK we seem to have a little club going. Have you finished treatment? And have you had surgery? So what happens next? How long ago were you first diagnosed? Sorry if I'm asking too many questions- just tell me to bugger off if I am.

Move that's very good news. Hopefully that means they've ruled cancer out then? Or do you need more tests?

chase that's a pain about the appointment. And I'm really sorry about your dad

Dulce it's stage IV so treatment is ongoing. I was first diagnosed in 2012. I had surgery and then chemo (XELOX). It came back in 2016. I've been on chemo since then.

Most of us have posted little summaries of our diagnosis at the start of the thread if that helps :) there's a mix of different cancer types but there's about five of us with bowel cancer now I think! Though fluffy hasn't posted for a while (hi fluffy if you're lurking!)

Thanks I'll have a read. Have a memory like a sieve at the moment. I've seen your post at the beginning of this thread with your summary. How do you find this chemo compared to xelox? Are you meant to take it long term? I know someone with stage 4 breast cancer who was told it was incurable in 2008 and she's still around. She's even younger than me. Like you say as long as it's treatable there is some hope. Do you mind if I ask how old you are?

Hiya everyone- been on lots of meds over the last 24 hours, had a good cry this afternoon and the nurses swept in to close the curtains so I think they'd been in the look out for it!!!!

Move that's fantastic news! Hopefully they'll figure out what wrong with you soon and that it's easily treated

Sorry to hear about your dad chase, I hope you've got plenty of support in real life. I'm pretty sure the aching arm will be nothing to worry about but speak to your doctor to put your mind at ease

Mrsp I'm not surprised you're emotional. The nurses are fab aren't they? I don't think I've had one yet that I didn't like. I'm sure that being a generally lovely person is in the nurses job description

I'm so sorry for the loss of your dad, chase..

Dulce I have a terrible memory too.

and for Mrspotter. Even without the stress of cancer and surgery, the GA drugs themselves can make you quite emotional.

Dulce I've found my current regime (FOLFIRI and cetuximab) much easier than the XELOX. Thank goodness as I've been on it for two years now! I'll carry on with it until it stops working. Then hopefully they'll have another potion to try :) I'm 27.

I hope everyone is having a lovely evening. I'm quite tired and wondering what time it is socially acceptable to put my pyjamas on

Leslie as soon as you walk through the door it becomes acceptable to put your pjs on. I live in mine, I probably have more pjs than I do clothes

That's encouraging

chasegirl so sorry to hear about your Dad

whatwould and purple Thank you. Not sure what goes on know. A team will look and tell me about my CT (receptionist told me over the phone that's it's all ok). Then they will discuss if I need further care or not. If I don't then I'm ok with it. I trust the CT so it's obviously nothing sinister as it would've shown up

That's great news that it's not cancer anyway :) I hope that they can work out what is causing your symptoms and get it sorted for you quickly

Hi all thanks for messages - yes I have a plan to decide between 2 plans!!
I can either continue and try next cycle at reduced dose with super strength anti sickness stuff or I can switch to capecitabine for extra 4 cycles on top of original 4...

Leslie what form did your illness take with the oxy combo? The consultant feels the reaction was severe vomiting but the breathing issue wasn’t allergic and I do agree as it settled so fast so it was severe ‘pseudolaryngospasm’ because of the puking. He is keen for me to continue and I know I should. It so hard to think of it happening again as it was so awful... but then I would lose that possible benefit...

to everyone in results limbo (and fellow chemo foggers- I have been in bed for 12 hours....!)

addle I didn't have any breathing problems. It wasn't an acute reaction like yours. I just threw up a lot throughout each cycle. In an older patient they would have discontinued treatment but as I was so young they were really keen for me to get the benefit of the oxaliplatin. I also had permanent diarrhoea, so again they would have discontinued for that. In later cycles (I had 8 as this was before SCOTT) I was very anaemic, to the point that I could barely walk without leaning on someone. I had blood transfusions for that. I found the hardest part of XELOX is that you don't really get a "good week", like you do with other chemo regimes, because as the oxaliplatin side effects wear off, the capecitabine ones build up, then they take a while to wear off, just in time for the next infusion. The issues like anaemia were only in later cycles so hopefully as you'd only be having four they wouldn't have a chance to develop. It was a grim six months but the way I looked at it was that it was six months to potentially buy me a long and healthy life.

I had the same decision between doing both or tablets only, though it was the same number of cycles either way. My oncologist wouldn't advise me either way. But I saw a different oncologist when I was admitted to hospital with chemo issues and I chatted to her about it. My issue was slightly different as I never finished the capecitabine each cycle as I was getting to the point where side effects were too severe and I was told to stop. So it was a choice between having oxlaliplatin and an incomplete course of capecitabine, or trying to do the full course of capecitabine on its own. She said she would rather have both and miss some capecitabine as the two drugs work better in combination. Obviously that was only her personal opinion, not medical advice, but I was already leaning that way anyway so I decided to go for it.

Sorry, that was really long. I just wanted to give you as much information as I could. I hope I haven't worried you more

No that was really helpful thanks Leslie I really feel like I should continue now. Sounds like you had a DREADFUL time for ages. How awful - must seem like a bad dream now?

I know what you mean about as one wears off the other begins (side effects of the 2 drugs) - I realised that first cycle with the diarrhoea after being on tabs for a few days it must have been wearing off of the opposite effect of the oxy!

That must have been some puking addle. I threw up after first but that might have been smoothie and mcflurry related and certainly wasn't serious enough for them to be worried about. Good your breathing thing wasn't allergic. Good luck with your decision.
Agree with what Leslie says about the capecitabine kicking in just as oxy wearing off - is very annoying. I was really looking forward to my week off but that was when the dire rear kicked in. Thank heaven for the Scot trial! I think I'm heading for another transfusion as very tired and wobbly this week. Still overall I've not been.too bad I suppose and most of my symptoms controlled by massive amount of tablets I am taking.

Tattoo what is the Scott trial?
I also have a very sore bum and that's just not cool. I'm feeling very nauseous this time around but not thrown up yet so I guess I'm lucky.
Adle it's a tough decision isn't it. Are you home yet?
Leslie that is very helpful. What symptoms do you get on the ones you're having now? Do you get breaks? Must be a bit surreal to be on it for so long but I guess you get used to it like you do to everything else!
Sun is shining again and that lifts my mood.

Dulce SCOT trial is why we can have four rather than eight cycles. Showed outcomes as good for stage 3 or less bowel cancer. Was only last year it came out - before that we all would have been prescribed 8 cycles of Capox. www.thelancet.com/journals/lanonc/article/PIIS1470-2045(18)30093-7/abstract

P.s. Dulce sorry about sore bum. Are you on jelly sweets? They can help a bit. Also someone recommended cream crackers to reduce poo acidity.

Dulce the symptoms now are mostly fatigue, nausea, a bit of breathlessness for a couple of days, that sort of thing. I did lose my hair, but it has grown back now. The side effects have gradually got easier over the two years so I guess my body has got used to it. I haven't had any breaks apart from for illness or surgery. But I've recently gone from two weekly chemo to three weekly so I get an extra week off :)

Bepanthen cream is good for soreness or Drapolene if you can find it (I've tried pretty much every nappy cream!). Metanium if it's really bad, but it will destroy your knickers! Don't wear your favourite trousers with any of them as they all leave greasy marks.

Are you taking all the antiemetics you've been given? If not, take them even if you're not actually throwing up. And if you already are, make sure you tell them you're still have nausea as there will be other types they can prescribe. There's no point suffering unnecessarily :)

And yes, I'm seconding the jelly sweet recommendation. I now take medicinal Haribo instead of loperamide! (Not suggesting you do that.)

Ooh you ladies have made my day! I've been officially prescribed haribos now. I did eat a few of the sour ones which helped the sickness but probably didn't do my bum any favours.
I am taking steroids and two other ones for the sickness - but today is the last day I can have them. I am also taking cannabis oil pills - do any of you take them? I have a friend who made them gave them to me and they are supposed to ease off the sickness as well.

Thanks for the hints on the bum cream as well. The joys of being a mum is that I have all of them in stock! So will try some today.
It amazes me how resilient you all are. I guess I am too. You're all so positive and brave. I am glad I've joined this thread now hope I don't get booted for being a soppy git

Yes I’m back home thanks tayto and dulce - it was a spectacular display! I have bit of a vomiting phobia too so extremely nervous about next time, but thanks to Leslie I have realised I mustn’t be a wimp and must try it again!
Thanks for the advice, and will keep Haribos in mind too!!!
Starting capecitabine tomorrow, little bit late to allow for recovery, but hope it doesn’t spoil the effect...

Dulce I've just ordered some cbt oil, no idea if it will be any good although at £40 a bottle I'm hoping it helps

*cbd oil. No idea what cbt oil is

Adle i also have a fobia about puking. It stresses me out to just think about it! Glad you're home and glad you've decided what to do. I think I would have made the same choice.
Purple let's hope it does help. I've been taking it from a week before I started so I'll never know if it's made a difference. But unlike you I haven't had to pay for them so I'm more willing to try
Leslie sounds rough but you seem to cope amazingly. And you're not even 30. I'm in awe