Cisplatin and 5FU treatment

Hello Weekend Walker 

I have no experience of either treatment so I am really sorry I can't help at all.  I think AllyL had Cisplatin but I have gone back through her posts and can't find any recent posts that mention this.  Ally, I hope you don't mind me tagging you, was this the regimen you were on?

Hope some other can help, Wendy

Irene xx

Hi Irene thanks for your reply.they put me on Carboplatin a d zPaclitaxel at first but I had it 2 years ago successfully but this time it wasn't as your body gets used to it and it has no effect,so now I'm on the Cisplatinand 5Fu hoping to shrink the tumour then hopefully immunotherapy so any feedback of others experiences I would be grateful

Mant thanks and take care 

Wendy

Not a problem Irene, very happy to share my experiences of Cisplatin.

Hello Wendy

My original tumour was treated with cisplatin and radiation. The tumour was large and locally invasive and that combination worked for me. My cancer is HPV16 and cisplatin is used a lot with cervical and throat cancers and from my understanding, anal/rectal HPV cancer behaves in a similar way.

I received cisplatin weekly by IV and was told it was very toxic to the kidneys. It's the older brother of carboplatin, but still very effective, platinum based, but different enough that hopefully your tumour will not recognise it.

I tolerated it very well, little tiredness, hair thinned and I went very pale. I did not develop neuropathy, but I was massaged and had a very active regime for exercise. Some latest research has had some positive results from standing on one leg after treatment. I am walking and using a rebounder with my current treatment.

I did develop some sickness by number 4, took a tablet before treatment and it went away. The first session I had a headache from hell, it passed and I only had small headaches after that. I have developed tinnitus, which is a pain at night, but I ignore it. I also have a cold thumb if I handle cold things in the freezer, I wear gloves now.

Before you get your IV they will make sure you are hydrated, for me fluids then treatment.Cisplatin, then they flush it through with manatol, then more fluids. I have a stoma and the bag would go up like a 'windsock', so a few trips to empty and lots full bladder. I drank lots of fluids and moved a lot after treatment and managed all 5 sessions.

Sorry I don't have any experience of 5 FU, but have you come across the FB group Anal Cancer Support? Huge group from all over the world, so lots of experiences and drug combinations. I am sure somebody will have had your regime and can share specifics.

Nivomulab has definitely been mentioned.

All the very best.

Ally xx

Hi Ally thank you that was very informative ,yes I'll look at that group and keep you posted 

Take Care Wendy