Starting Folfiri treatment soon

Hi Anniepan,

Thanks for your replies. I’m so glad that you are doing so well. I considered asking for a second opinion regarding liver resection and spoke to one of the Macmillan specialist nurses about how to approach it. She said that while she was very happy to support me through getting a second opinion, she thought that my colorectal team were giving the very best advice as I have large tumours on two lobes and frankly there wouldn’t be enough liver left to support me if they were removed. Each time we speak I press my oncologists a little to give me their reasoning and assurance that they’re following the very best pathway for me. I’ve decided to trust my team, who knows if it’s the right decision, but I know a struggle isn’t something that will help me to thrive. I’m hoping that each one of them will think of me as a favourite aunt.

Best wishes,

Sweetsweep

Sweetsweep How is your wee grandchild getting on ? I think you posted some lovely pictures from your garden last year ! ( or am I getting mixed up ).

All the best with your new combination of chemo . 
Love the favourite aunt part !

Court 

Hi Court,

He’s snoozing on my chest as I type this! Moments like this make the sheer hell of the chemo worthwhile, I hope I remember that when the Folfiri side effects kick in. I’m ok but I wasn’t at all surprised to learn that I’d need more chemo, I thought I could feel changes in my body. Fingers crossed that the Folfiri is effective.

I didn’t post pictures but I did quote Dennis Potter’s description of spring blossom. My neuropathy is still quite bad, no more delicate artwork for me, but I have managed to teach myself macrame. It keeps my brain engaged and I can get by visually in spite of having no feeling in my fingertips.

I hope all is well with you.

Sweetsweep 

How wonderful Sweetsweep. So glad you are having such a good time with him !

Its funny how our memory works . I knew there was some connection to Spring !

Well done on teaching yourself macrame! I tried it once as a student and thoroughly enjoyed it ! However never since then .  So glad you can do it . The neuropathy is so difficult!

Strangely enough some people seem to report to finding flofiri more tolerable and I have noticed some people seem able to stay on it for a while .  Hope it turns out that way for you and knocks it back down ! You seem very perceptive at detecting changes within yourself ! More shrinkage would be fantastic!

Take care ,

Court 

Hi Sweetsweep

My husband had his meeting with oncologist today. He,also wants to get the liver resection done asap. However the oncologist wants to see some shrinkage first. He will start the Folfiri on Friday. His tumour markers in the blood have come down but alas 3 tumours got a little bigger. We trust he is doing the,best he can and has all the tumour marker information etc. Unfortunately his MSH  is low so he is not a candidate for immunotherapy. We just have to move forward and hope the Folfiri works its magic. Best of luck to you too.

Hi Sweetsweep

I have just done my 4th of 6 cycles of Folfiri & Panitumumab. I previously did 8 cycles of Capox (4 before op and 4 mop up). Obviously everyone is different, for me it has been ok on the whole. I started on 80% and had a very severe reaction to the Panitumumab (Grade 3 skin reaction). I am now taking cortisone every day, on reduced dose and antibiotics and things are MUCH better.

My hair is falling out, not in clumps, just a lot of strands. I cut it into a short bob, and have just shaved the underneath parts - a kind of undercut lol, I am hanging on, but refuse just to shave it al of when it's still there for the most part!

I mostly just find I get very tired, and there is a bit of a diarrhea purge the day I get my pump disconnected. But as you know, you get used to it all as you go through it. Now I now more or less what to expect on what day and it does make it easier to manage. I am putting on weight - obviously the cortisone - but honestly, I lost a lot on capox and it was horrible so not worried. I was able to exercise through capox but haven't managed much on Folfiri. Nevermind, I just try to get out and walk as much as I can when I feel like it. 

Hope it all goes well for you, any questions, do ask.

xx

Hi Strongsami,

Thank you for your reply. I’m due to start my treatment on Monday. I’ll be starting on a low dose as my liver is so compromised. I’m scheduled for 12 treatments with a dose increase as my liver function improves.  

Capox/Xelox was hard for me, I felt absolutely awful. I couldn’t exercise at all during the treatment and I only managed short strolls during my ‘week off’, but if I can have short strolls I’m happy. I’m not worried about losing my hair, I think I’ll rock the bald look, I’d miss my eyebrows and lashes though.

I hope you continue to do with well.

Take care,

Sweetsweep

Great to hear Annie pan.

• Every success with your next stage. My husband is,starting the Folfiri this morning. His CEA and CA19-9 were being measured, just that nobody told us! They both came down from 48 to 32 and 55 to 42 respectively. However 3 if the tumour s grew a little. According to his molecular analysis of the tumour tissue he is MSH  low which means he won't respond to immunotherapy nor some other options sadly. We are praying for shrinkage with the Folfiri

Hi Sweetsweep it's sounds like you're pumped up and ready to go! 
Sounds like a good strategy to start low and gradually increase. My biggest thing has been making sure I drink as much as possible as I get a lot of diarrhea. So whether it's water or herbal teas or juice I have to push myself. I have started infusing water in the fridge overnight with things like mint, peach, lemon and cucumber which I have to say I am really enjoying.

Best of luck for Monday! Thanks for your kind words and here's to you smashing this!

Rocky hugs

Sxxx

Thank you