The Colon Club

Hi all.
My mum has just started her 10 rounds of Folfox today but having allergic response that her throat enlarged. Onco said this is a very serious side effect that Folfox is no longer an option for her.

The onco gives us a chemo break for 2 months as my mum's CEA is doing good (plz refer to my signature). We are worried as her CEA rose before when she received a 1 month break.

There are two questions for us:
1. Is it normal for my mum to take such a long break now as she had just finished 10 rounds of Folfox instead of standard 12 rounds ?

2. Folfiri will be use after 2 months break. I have heard that folfiri has side effects such as losing hairs and diarrhea. It is very worrisome as my mum is now using stoma. Any suggestions on this drug?

Thanks for any comments in advance.

The only thing I can offer is my own experience. Within the first couple of treatments on Folfox, I lost almost all my hair! My oncologist was very surprised. I guess there are no guarantees. It has been 3.5 weeks since my last Folfox, but my labs showed platlets at 85 yesterday so we are waiting to try again on Friday. It will be #9 of 12 for me.

I do not have a stoma and diarrhea was a real issue with me. I take 4 Lomotol pills a day and have a Sandostatin shot every month and that has worked for me. No salad. No fried food. Smaller portions. I still wear a,Depends when I leave the house...just in case.

Best of luck with the change.

Mercy110 wrote:Hi all.
My mum has just started her 10 rounds of Folfox today but having allergic response that her throat enlarged. Onco said this is a very serious side effect that Folfox is no longer an option for her.

The onco gives us a chemo break for 2 months as my mum's CEA is doing good (plz refer to my signature). We are worried as her CEA rose before when she received a 1 month break.

There are two questions for us:
1. Is it normal for my mum to take such a long break now as she had just finished 10 rounds of Folfox instead of standard 12 rounds ?

2. Folfiri will be use after 2 months break. I have heard that folfiri has side effects such as losing hairs and diarrhea. It is very worrisome as my mum is now using stoma. Any suggestions on this drug?

Thanks for any comments in advance.

Hi Mercy,

I can't comment on Folfiri because I only take Irinotecan which is the Iri part. I also take Cetuximab which is an antibody therapy for KRAS Wild. I experienced severe diarrhea from Irinotecan at first because of the high dosage, the doctor adjusted my dosage until it was tolerable and manageable with lomotil, atropine and tincture of opium when it got really bad. I have been able to manage with diet adjustments and have also increased my dosage by 50% over the past month. I have very few side effects and I also have a stoma which actually made it easier to deal with the diarrhea at first. I had to get hydration for one week before they adjusted my dosage. I also had a bad reaction to Folfox after first and second sessions so I was never given the option of Folfiri.

Good luck to your mum! She's so lucky to have you looking out for her

Best Wishes,

Shana

Hi Mercy,

Can't really say what's normal, but I did have 2 months from my last FOLFOX infusion 12/13/17 and starting FOLFIRI + Avastin on 02/14/18 (Valentines Day and Anniversary and made it through dinner fine). I had a post chemo CT scan with results on 12/28/17 which got me to a liver biopsy and 2nd opinion scheduled in Jan. which took some time.

I do not have a stoma so I can't offer any thoughts on that, but I had my 3rd FOLFIRI + Avastin today which they have been giving me an atropine injection each cycle to help. So far I've only had one case of diarrhea on Day 1 of the first 2 cycles (none today) and took 1 Imodium each time with no more issues. As far as hair loss, I lost some hair during FOLFOX, but seem to be losing more on FOLFIRI (went ahead and shaved the beard do to loose hairs). Top of head was thin before chemo, but sides and back still hanging in though thinning.

Unfortunately, the side affects just like our cancers, vary with each individual. They do share several commonalities and some of the longer term members can probably give you a better take. Good luck to your mum and you!

Larry