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Beating Bowel Cancer Community

Bowel cancer treatment and side effects

LankyYankee

Update and some worries/questions for my bowel cancer crew please xx

Howdy y'all. Sorry for the long silences between posting. I'm trying to catch up with how everyone is! I have been so quiet as my husband and I were planning and implementing our back garden wedding. On top of all the work that entailed I also had a house Full of visitors for the wedding. It was wonderful although now I totally understand why people pay a fortune to get married in a hotel or abroad....cuz it's a shit ton of work! In addition I stupidly ended up in hospital for 4 days due to severe dehydration etc literally just days before the wedding. It was all a bit hairy there for a while. Anyway I wanted to pick your brains over a couple of things if it's ok. For those on capecitabine regimes....I started on cape plus irinotecan, cetuximab and denosumab last week. This should be only for this one cycle (cycle 10). When I got married I had 2 weeks off Chemo. This was as much for the wedding as it was because the toxicity of folfiri plus cetuximab had taken its toll on me. I had multiple infections, was very dehydrated and had blistered skin all over my face neck and chest. Although the 2 weeks off resolved my skin and infection issues it allowed my Cancer a window of opportunity. My bone mets surged back to life in the second week 😞 my oncologist decided due to this that we couldn't delay any more to allow me to have a new picc line put in so started me immediately on Cape plus cetuximab and irinotecan and denosumab. I'm now a week into this regime and I've noticed I'm losing weight like crazy and I'm starving hungry! I'm not having too much diarrhoea or anything so the weight loss is now worrying me. I don't know if this is the capecitabine or if it's my cancer revved up from the break. Has anyone else had this effect?
On another note .... Those of us who are not curable.... how do you maintain hope for your future? I've found myself quite low a few times over this. I think in part I'm still coming to terms with the reality that no matter how well I do...my future is never going to be the quality or length I had always envisioned. I struggle often knowing I will not see my kids go to university or get married or become parents. I was laughing at a picture of my 8 year old nephew today dressed up for a parade and saying to his mum...we need to show him this when he turns 18! Then remembered that I wouldn't be there for that family event. I am a person who loves to learn and explore and challenge herself and at times now I think...well what's the point? I don't want to worry y'all. I'm not despondent. I'm functioning pretty well and I have even returned to my beloved work on a phased return. I'm going to the Guns n Roses concert next week in London etc so I am planning and doing fun things. It's the day to day hope and looking forward to my future I struggle with. I'd love to hear any stories or bits of advice or even if you want to share that you have maybe felt the same. Thank you so much everyone. Lots and lots of Yankee love for y'all :x::x::x:

Scarlett the Bulldog

Beautiful photos Laura xxxxxxx ❤️❤️❤️

Hollyhock

Omg your pictures are amazing. Massive congratulations to you @LankyYankee , and its lovely to have you back :x::x::x::x:

Lady B

Looking absolutely gorgeous @LankyYankee, photos are beautiful, so happy you had an amazing day! xx😘🤗

Mags54

@LankyYankee , really beautiful photos and I'm so relieved to see that you're back on here. You and @Bear Gst are my absolute heroes. :x::x::x::x::x:

Chris RW

Wowza! How fabulous and happy you look, many congratulations. Also the 'venue' looks wonderful. I know it sounds cheesy but you can feel the love in all these pictures.

As for the future just keep on keeping on, lots of things to look forward to. None of us have any idea what's ahead of us. I'm very well at present but a few weeks ago for no apparent reason I had a very bad day worrying about the future, then that evening I lost a friend in the Manchester bombing. That day she hadn't a care in the world but it was her that didn't come home not me. Life is so random.

Also treatments are getting better all the time, the control of this disease is far better than it used to be.
Wishing you all the very best, you strong wonderful woman.

Cx

Swan

Congratulations @LankyYankee looks live a very special day. :x::x:

Mrs Rufus65

What lovely pics of your beautiful day @ LankyYankee :x::x:

blueorchid

@LankyYankee you look soooo amazing. Congratulations to your wedding.

Mandy

You look so beautiful ,brought tears to my eyes :x::x::x:

steve707

Good to have you back @LankyYankee. You look stunning. Congratulations to you both he is a lucky man. :x::x::x:

Juliem1969

@LankyYankee what gorgeous photos you look sooooo happy, love them x congratulations :x::x::x:

angepange

The pictures moved me @LankyYankee . You looked stunning. What a beautiful event.:x::x::x:

LankyYankee

@Pitstop oh baby what treatment are you on?!!! It sounds exactly the same as what happened to me a few weeks ago with cycle 9 of FOLFII plus cetuximab. I was blistered all over my face and neck. Mouth ulcers. Split fingers and feet and pouring diarrhoea and electrolyte imbalance. How long have you been in? What can I do yo help? Ill do anything!! Sending you all my healing love! Ill rock out for you at GnR my girl!! :x::x::x::x:

Pitstop

Oh @LankyYankee, I wish you could help but it doesn't seem like anybody can right now. I've got continual green diarrhoea, face, neck & chest is blistered & dry, I'm so dehydrated but they don't seem to be keeping up with giving me enough fluids. My friends, a nurse & a consultant keep coming in to check on me, & without them pushing & saying I'm not getting enough fluids & to up them, I truely think I'd lay here & die of dehydration. They are going to try & put a PICC line in to feed me TPN as I'm getting no nutrition going in. Problem is last time I had a PICC line he gave up after 3 attempts saying the vein network in my arms were mostly missing, I begged & after 4 attempts it went in, but just don't think I can go through that all again. I've got a port and I can't see why it can't go through there? How did they slow your diarrhoea, no amount of loperamide or ocretide is helping. Last night I was sick as well, & I keep getting temperature spikes. I feel like under the water I'm paddling like crazy but getting nowhere. Im on irrinotcan, 5FU & Cetuximab, but it's obviously been stopped for the time being. Any suggestions greatly received!! I hope you're doing better now LankyYankee 😘 :x::x::x:

DianeS

This thread is so full of happiness and sadness all at the same time. It made me cry to see your beautiful wedding photos @LankyYankee, you are truly an amazing person, for your strength and the kindness you show to others when you are going through so much yourself. @Pitstop, I wish I had a magic wand to make you better, what you are going through sounds so terrible and I pray it gets sorted out soon, and the dehydration and diahorrea stop. Thinking of you too @Alwyn. Love to you all ❤️❤️❤️❤️❤️Diane :x::x::x::x:

OFJ

Fabulous photos @LankyYankee , thank you for sharing them with us. Big hugs to you and also @Pitstop and @Alwyn ❤️❤️❤️ :x::x::x:

Sussex34

I'm afraid I can't help with your questions but I just wanted to say what stunning photos. You look beautiful and i ❤️ Your dress. Also the set up is just gorgeous so pretty. For what its worth getting married, going back to work, getting on and living.. these are all things that you are doing despite your diagnosis, isn't that your hope right there. Lots of love. :x:

LABluebell

@LankyYankee you are one amazing lady. Gorgeous family, Beautiful day. Such guts to carry on and DO in spite of it all. Everyone who lives with stage 4 feels your pain and knows those dark thought intimately - and yet....they also celebrate with you those amazing moments - one on one, and push them to the front because that's the only positive choice to make - and you and Alwyn and Pitstop and BearG and all the incredible people on this team are practically positively perfect at doing it! A million gold stars to you al!! Now then, when are you having a holiday with your gorgeous children and your NEW husband??? :x::x::x::x:

jean

Wonderful photos @LankyYankee. You look stunning xxx my thorts are with you all @Pitstop and @Alwyn :x::x::x::x: