Finished Folfox - starting 3 cycles of Cape / Xeloda - anyone any experience of it?

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Following a successful PET Scan the MDT meeting (minus my oncologist, he was not there, his nurse was there) decided 12 cycles of Folfox were not needed. I was given the choice of continuing of stopping. Having read some 'NICE' and BMJ articles I opted for just a further two cycles as a compromise, thus bringing the total cycles to 8.

I finished Folfox officially on 30th Sept. PICC Line is now out (yay!) and I took numerous boxes of chocs and some free children's poetry books (I write and publish as a hobby) to the unit as a thank you gift for the nurses, cleaning lady and receptionist. It's great to have the PICC Line out as I can now go swimming again!

I've now been referred back to my original surgeon for ongoing surveillance (4/5 years I think). But...

Today - I just had what I thought was going to be the last phone call, from my oncologist. However... he's suggested that, although the PET Scan was clear, he would recommend 'finishing off' with 3 cycles of 'Cape' / Xeloda over nine weeks. At present the chance of the cancer 'not returning' has increased from 40% to 59%, having the 'Cape' would bring this to 65%ish chance of it not returning. Hence, I've opted to do it.

Question: has anyone any experience of this tablet drug (gather the body changes it into a FU5, which is part of the Folfox chemo??).

Does it cause hair loss? (Hair is already thinner!)

Also - I'm exercising a lot, at present, as my energy levels are good most of the time. Hoping to start cycling and swimming again soon. Do you think swimming is ok on chemo, now that PICC Line is out??

Best wishes to everyone on the Macmillan site

Nettie

FormerMember over 3 years ago

Hi Nettie, sounds like you are going in the right direction. A clear Pet scan is a great news. I cannot say Cape Citabine did much for me, other than make my feet burn.

The 5FU isn’t pleasant but the Irinotecan, which is part of the Folfiri is causing my hair to drop out. So Folfox is Folinic acid, 5FU and Oxalaplatten. So hopefully no hair loss. Fingers crossed.

I think swimming is ok but check with Onc. I have to stick to the sea, with a tee shirt on, cos of the ileostomy.

Good luck RogerM.

Nettie123 over 3 years ago in reply to FormerMember

Hi Roger M

Thank you for your swift reply. Sorry about your hair loss. Mine is thinner and very dry after folfox. Now using a chemical free shampoo as less harsh.

I will check with oncologist re swimming pool. Not sure whether chemicals in pool water are ok with chemo.

Good that you can swim in the sea. I live near the sea so that may be a safer option as no chemicals, but quite cold in Autumn!

Stay safe

Best wishes

Nettie134

blackstuff over 3 years ago in reply to Nettie123

Hi Nettie134.

I had Capecitabine alongside radiotherapy for 5 weeks in 2019. I had APR surgery in July 2019, then 6 months of Capecitabine as mop up. I can honestly say that I felt fine. The worst thing I had was hand and foot syndrome ( palmar plantar), which made my hands and feet peel and be very sore. It seems like a small price to pay as my scans have come back clear for the second year since my treatment. I didn't have any hair loss at all. I would say go for it. Good luck.

Kim x

Blackstuff

Nettie123 over 3 years ago in reply to blackstuff

Hi Blackstuff

Thank you for your reply. Its very reassuring. I have pre Chemo next Thurs.

I agree sore hands and feet are small price to pay. I'll go with the flow, its only three cycles.

Great to know your scans are clear after two years. That's cool.

Stay safe.

Best wishes

Nettie 123

FormerMember over 3 years ago

Hello,

I had nine cycles of Capacetabine, four with Oxaliplatin. Compared to Capox the Capacetabine itself is a breeze. I only found it too much towards rounds 8/9 so I reckon 3 rounds is a good idea for you as a belt and braces approach.

Good luck!!

Ellen

Nettie123 over 3 years ago in reply to FormerMember

Hi Elly019

Thank you for your reply. Good to hear about your experience with Capacerabine.

I've just finished 8 cycles of Folfox - quite lucky, didn't have too many side effects. I agree re: 'belt and braces approach' - I'm pleased my oncologist offered it.

How are you feeling now? Stay strong and safe.

Nettie