Bowel cancer treatment and side effects

LankyYankee

Folfiri cycles greater than 24?

Hi everyone I'm hoping for some help. I'm currently on cycle 22 of folfiri and doing well (touch wood) My Onc is keen to continue until either I can't take anymore, my cancer progresses through it or my bone marrow gives up. My onc was looking to make contact with other consultants that have patients on greater than 24 cycles. He just wants to build a little once community to share management techniques. If anyone is happy to share who they are under could you message me please? And for everyone on folfiri no matter how many cycles you have done...my heart is with y'all xxxx LY

LankyYankee

Hi all xx wow what a roller coaster this cancer malarkey is huh? I've been home recovering and once again my skin kind of cleared then over night I seem to have had a new outbreak of painful pustules all over my face. Back to the steroids for now. At least the skin isn't peeling off leaving me vulnerable to infection. I'll be honest that the loss of my physical identity is getting to me. I look in the mirror and I look nothing like myself. I've been stoically dealing with it for months now but I'm starting to struggle. Yesterday I wouldn't leave the house. I just put a hat on to cover my frazzled unruly hair and hid. I've got to go out today and then I'm working the remainder of the week. I'll just have to muster up my stoic face but inside I feel freaking angry! Everything cancer is stealing from me why can it not leave me some shred of dignity at least? I was wondering if y'all had any coping strategies. Please excuse my blatant vanity. I just miss me :x::x::x:

Daffodil

Just sending you HEAPS of loving hugs @LankyYankee . you have been so brave and your posts have helped so many people. I wish I could wave a magic wand and make it all go away.:x::x::x:

chrissie

Your wonderful personality shines through in your posts @LankyYankee and you have helped so many people. Unfortunately my magic wand is in for repair but I am sending you lots of healing hugs :x::x::x::x:

Bear G

Hey @LankyYankee
You’ve been fab throughout this but your allowed these wobbles. Please rest assured that we all get them.
I thinks it’s probably more pronounced when the side effects are physical and especially cosmetic - the impact shouldn’t be underestimated. It’s far more than superficial.
You are naturally stoic, determined, positive and uplifting. Just don’t beat yourself up for being overwhelmed from time to time.
That’s probably my best advice, that and to have a couple of really good friends round for a natter about anything other than cancer (I’m not saying hide from it, more to have a lovely distraction), that certainly helps me.
Big hugs
Bear
:x::x:

CD1966

I can't add anything to what the others on here have said except to say keep your pecker up @LankyYankee - you're an amazing last and doing brilliantly.

Sele2017

@LankyYankee you are doing very well, I just finished cycle 12, and next week I am going for cycle 12 for only cetuximab! You have been brilliant! Just don't be so hard to
Yourself,. The spot can be overwhelming but I don't let them beat me! I just put more make up and off I go! :x:

springer michelle

So sorry to hear this, hoping a break before xmas is the best thing for you and you can get your strong self back and fight. You're amazing, what you see in the mirror is a fighter :x::x:

Baxter2

Just adding my love and support to you @LankyYankee and hope that today is a little brighter for you.

K ????❤️

LynneW

Hi @LankyYankee, as @Baxter2 has said, I hope that today is a better day for you. It does you good to have a blow-out occasionally. How can anyone stay as brave as you have been? You worked through all of this, not many people can do that! You have been comforting others in the same position as yourself! You are forgetting just how wonderful you are! All because of spots! It isn’t really vanity, it is the last straw! After all you have gone through, I think you are allowed a bad day now and again! @Bear G also gave you some good ideas, get those mates around. :x::x::x:

fnkyf8

@LankyYankee big hugs sweetie. Sorry you're going through such a tough time. Breaks do wonders for my mood lifts me no end. I tend to feel day to day I can cope with anything yet on days I feel particularly rough I am a sobbing blubbering mess! I allow myself these days I've deserved them then pick myself up and carry on. I figure I want to do 'normal' things for as long and as often as I can as I know the day will come when I can't :x::x::x::x:

Naomi6861

@LankyYankee, I'm sorry for what you are going through. I think you are amazing, I admire your strength and tenacity. You are always there for everyone, happy to share your knowledge and experiences with us in a very honest and selfless way. You always try to help others on here and come across as though you genuinely care and are interested in others. All of this while you are dealing with so much. We are lucky to have you on here. I am sure that your beautiful sole will be shining through and although you may be feeling like you are losing your identity, I know that people around you won't see it as they love you whatever. Give yourself a break and give yourself a massive hug, you are amazing (I'm desperately trying not to say inspirational!). Sorry for my ramblings, it's 5.13am, I need to get some sleep! :x::x::x:

Sasa

Hi @LankyYankee how did Christmas go? Hope your skin settled down for you. Been wondering how things were for you, you always manage a smile which is a great tonic for all!

Sarah :x:

LankyYankee

Howdy @Sasa my skin settled down well with the two week chemo break. The only place left still raw on my face is right on the tip of my nose. I told the Kids I was turning in to Rudolph! Lol I had a CT scan this week. I got the results yesterday. They show things are mostly stable. My liver and lungs remain clear. My lympnodes and bones have flared up a bit due to the 2 week break. Subsequently for the last 5days I've been in absolute agony from my bone mets. My hip literally feels like it's going to break in two. My Hospice Nurse and my GP are escalating my pain relief each day to try to get on top of it for me. I'm actually looking forward to going back on chemo on Tuesday. My oncologist said my cancer is very sensitive to the chemo which is good but the moment I stop chemo my cancer kicks into high gear. He hit me with the cold hard fact yesterday that I will never be off treatment until I am ready to give up. My hubby and I have chatted and we are brainstorming ways to increase my quality of life while I am on Chemo as this is my life for the foreseeable future. If you have any ideas fire them at me please! I hope you've had a lovely holiday time and that you are well :x::x::x:

LexiStar

I’ve had about 55 rounds of Folfori. And had 11 rounds of Oxiplatin before that. It’s keeping my cancer stable and I have had shrinkage so there is a small possibility I may be able to have surgery after being told I was inoperable. Not getting my hopes up but it does give hope to Stage 4ers. :x::x:

LexiStar

Sorry I forgot to say I’m having treatment at The Christie. Hope you’re feeling better :x::x:

Barbara

@LankyYankee If you are suffering with side effects it would be worth trying fasting. I can’t say it’s the reason I’m not having side effects with irinotecan and capecitabine- am not even using anti nausea medication or steroids. But I did have side effects when on oxaliplatin and capecitabine. You would have an immediate control as you would know if it was different to non fasting, whereas I’m stuck with it really. 26 cycles now! Hope I can keep going to 55+ @LexiStar

Sasa

Hi @Barbara ,

I can vouch for the fasting, Mark does it and it helps massively with side effects. I recommend people research it as there is a lot on the internet about how much it boosts immunity too.

You are one very strong woman @LankyYankee , you truly are an inspiration ?⭐️

Sarah :x:

CD1966

Glad to hear you are still in good spirits @LankyYankee even though the dratted mets are giving you pain. Hopefully the chemo will clobber those again for you shortly, in the nicest possible way. My brother is still getting severe pain in the area around the top of his femur where he had the radiotherapy in August - apparently his scans in November show an area of calcification there which is the size of a grapefruit. His onc and ortho surgeon both say they are happy that this treatment has worked but we are not sure he should still be getting this much pain and lack of mobility. No new areas have shown up in any scans, though. He is being given oramorph for this, which he hates, plus a plan for physio to help with this. Is there an effective alternative to oramorph? I really hope your new round of treatment makes things easier for you: keep on keeping on!

Lee1974

I know you have plenty of other things to focus on at the moment Laura, but I have just passed my 24th session of 5FU & Cetuximab, so would be happy for my consultant, Dr Chan at York Hospital to pass on any details to your consultant. Message me if any further info needed. Best wishes, Lee :x:

GD62

Hi @LankyYankee wishing you all the very best, hugs :x: