Stage 4 bowel cancer

Sarah Morgan

Folfiri - treatment break

My husband has had 8 cycles of Folfiri & is starting to really struggle. He was offered a treatment break after cycle 6 but declined. Any similar experiences please? :x:

Terrish

If he is struggling, maybe take the treatment break. I had a few delays where I had important things to do and I wanted to feel well (father's 80th so delayed 2nd treatment by a week). Other people will be on shortly who have taken breaks for various reasons.

Clancy

Hi @Sarah Morgan, I missed a cycle about a month ago. My face erupted and was bright red, and wouldn’t calm down. I am on Folfiri and Panitumumab and I am finding the Irinotecan really hard going. I am now on 80% dose because I had no quality of life on full dose. I would have a chat with the nurse clinician they are really helpful. Good luck.:x::x:

Sarah Morgan

Thank you @Terrish @Clancy. Ian is back in consultant led clinic on Tuesday so I’ll prompt him to discuss both your options then.
@Clancy hope things will improve for you with the dose reduction :x::x:

Polly 1

My husband had a one cycle break from 5FU/Cetuximab last time. Like you @Clancy his face erupted - bright red and spots particularly face and scalp. He was hoping for a rest from skin problems but sadly worse than ever!

waiteh

We were offered a treatment break after cycle 6 and a good scan with mets reduci g, but we declined and we are just on cycle 7 now. Husband more tired than he has been but nothing major luckily to report. He is on folfiri. We haven't had any other treatments or surgery to date

Jane39

Hi @Clancy , @Polly 1 - are you saying that the skin got worse after missing a cycle? Was thinking of having a dose off pre holiday but maybe not !?

Polly 1

Yes @Jane39 it got worse! The same thing happened when he missed a cycle last September I think. C thinks it could be possibly be worse due to the break from Doxycycline.

The Oncologist told him rather than take too many and the body gets used to them to try 5 tablets from day 3 to day 7 each cycle which is what he usually does on a normal cycle. Missing a cycle this time he didn't have any after that and thinking about it the Cetux keeps going for a month or so after stopping dosnt it?

It was so bad he couldn't shave for over 3 weeks but back on Doxy a bit earlier this time a couple of days before treatment on Wednesday and he managed to shave OK this morning. The IV Piriton on Wednesday probably helped as well.

Do you have daily Doxycycline regardless? I know others do.

Clancy

Hi @Sarah Morgan, @Polly 1, Jane 39, personally I have found Folfiri plus Panitumumab quite hard going, I was better on FOLFOX and Pani. This may be through flattened immunity, toxic build so reduced dosage and a chemo break is a very good idea. Many on this forum take breaks for holidays, and I have followed their example.
I really sympathise with your partner @Polly 1, having a big red face really knocks the confidence, and I refused to go out of the house for 2 weeks, no yoga, Pilates or walks, not me at all! And then I developed low mood, and stayed on the couch. I have tried every lotion and potion known to man, nothing covered the redness.
I wondered if the sun had caused it because apparently on cloudy days we can still burn. So it’s factor 50 everywhere, by the front door, kitchen, handbag, car! It’s like living in an Australian household.
@jane Morgan, the tiredness and nausea from Folfiri is tough, I take my anti emetics as prescribed and don’t wait to feel sick and I still take my Ferrous Sulphate.
I have a strong belief that this chemo is working for me rather than against me. I have attended hypnotherapy sessions in Urmston, a god send, and listen to the disc whilst being infused.
Good luck everyone, and if you find a potion for the red face syndrome, please let me know, sending love.:x::x:

Jane39

Hi @Polly 1 That would make sense regarding the Doxy. So my oncologist says to take Doxy every day and have done so for 17 months ! I suffer with the occasional spots but very manageable. The red inflamed skin and face and dry skin seems to plague us all! @Clancy , I empathise and understand everything that you say. I am lucky to have been able to drop the Irrinotecan and am maintaining on 5FU and Panitumumab. I hope for a cycle off pre holiday.

I have had lots of input from dermatology in the last few months as things became so bad for me with severe dryness and painful folliculitis . I am happy to share my regimen but aware that it is individual and needs approval of oncologists, and of course great tips from forum members which is so valuable.

Doublebase gel, bath and shower washes have worked a marvel for my dried up skin and the relief has been dramatic, but requiring 3 applications per day. I use Eumovate ( a moderate strength steroid) twice daily to my face and this really seems to control the redness and inflammation. Obviously there are side effects to steroid creams and needs doc approval. MSM MooGoo cream is good for my face and recently found No 7 replenishing face oil and No 7 Factor 50 BB cream that appears to not irritate - thanks to a forum member :x::x::x:

Baxter2

Hi @Sarah Morgan

I'm just wondering if your husband has Cetuximab as well as Folfiri? If he doesn't have Cetuximab then there shouldn't be a problem. You both just need to be mindful of the stupid rules around stopping Cetuximab as there seems to be a bit of a postcode lottery in determining whether you can have a 4 or 6 week break or even longer. It would be important to weigh this up before making a decision about a break I'd imagine.

I'm still on Folfiri and Cetuximab and have had a six month break for surgery and a few 1 weeks delays in treatment for holidays etc. (I'm using our health insurance since NHS Fife wouldn't continue Cetuximab beyond a break of only 4 weeks.

Sending best wishes

Karen💚💜💙❤️💛

Sarah Morgan

@Baxter2 only on Folfiri as not eligible for anything else 😟

waiteh

Sarah my husband is the same. Just folfiri or folfoxiri was our choice as he doesnt have the right genetic mutation for the immunitherapies. Thankfully the "basics" are working for us right now.

Sarah Morgan

@waiteh glad to hear your husband is doing well. This is Ian’s 2nd lot of chemo. He had Folfox first time round.