How much hair should I expect to lose on Folfiri?

Really depends on the patient. See this link
https://csn.cancer.org/discussion/192271/hair-loss-with-folfiri-vs-folfox

Thank you! I hope it just thins like the folfox did for me, but I have this feeling I will be losing lots more…. I will try to find the positive in this….

I lost about half of my hair. I chose not to shave my head. Luckily my hair is curly. It is thinner, but has grown back nicely.

@myjiggers1 I did 6 months of Folfiri + Avastin. I knew going in I could lose a lot but unlikely to lose all. I did pick out some wigs and scarves in case but didn’t purchase them as I didn’t need them.

I shed hair heavily all over the house to start with then it also started coming out in clumps in my hands when I washed my hair very gently as little as possible (usually once a week).

I ended up losing about two thirds (I have a lot even though not thick).

Luckily the third I kept was evenly distributed around my head so I didn’t need to shave. People who didn’t know me just thought I had thin fine hair. I also wasn’t allowed to colour it other than with natural vegan colorants (which I chose not to use) so grey came through too. At least my hair didn’t grow so less grey than I thought!

I deliberately chose not to do cold cap during treatments to try and save my hair. My research showed it didn’t work for most and that it was very painful to tolerate in the chair.

The upsides were: I did keep my eyebrows and eyelashes. I didn’t need to shave my arm pits, legs or bikini line!!

My hair has grown back thicker and healthier than before - and unfortunately I am also back to shaving!

I ended up loosing almost all my hair after the first few treatments, it just came out in clumps so I ended up shaving. If you do shave, just be very very gentle on your scalp - sharp clean razor, and go gentle. My scalp wasn't used to seeing "the light of day" so to speak, so at first even the shower water hitting it made it hurt. But that resolved very quickly. My hair has since grown back, thinner, but mostly even. I never tried a cold cap, but I do note that if I take a hot shower during my 5FU pump time (I go home on a 46 hour pump) I do lose more hair. I have a bald spot on the back of my head from an ill advised shower I took while on the pump - oh well live and learn. 🙂

Thank you so much for this advice! I know I keep my showers to 5 min and use warm instead of hot. But thats to help with hand/foot syndrome I got the last time on chemo. I will definitely follow your advice! Your bald spot won’t fill back in? I don’t know if I will have an end date to chemo until they scan me… and even then I don’t know. They did not sound too hopeful. But if it buys me time with my son its worth every minute!!! God bless you Bigskysue! ☺️

Shaving does suck lol 😂 Thank you for sharing with me your experience! I am shedding all over and its been little clumps all around the shower floor and my hand when washing gently. I am not blessed with lots or thick hair, so I am definitely stressing about it. A nice friend from church bought me some just in case caps in all colors so if I start to get uncomfortable I can wear them. My leg hair slowed down but has yet to disappear 🫠. Its gonna be a long haul. They aren’t giving me an end date this time. Ugh 😣 I will pray for shaving days!

@myjiggers1 Sending hugs 🌺

You’re not alone in your feelings. The only time I cried during my stage 4 diagnosis and treatment was the day I was washing my hair and massive clumps came out in both hands. I was so scared to look in the mirror. This is despite thinking I had it all down with getting wigs to rock and cool head gear if needed!

I worked out that what floored me in that moment was that I might no longer be able to go out in public without being identifiable as someone who was ill. I hadnt realised that had mattered so much to me. Looking “normal” had helped me pretend to be normal and get on with it.

After that initial trauma I know I would have been fine if I had to wear wigs or headgear, depending on the weather.

One of the people I worked with - a lovely lady called Nina - chose not to tell us she was going through cancer treatment. She wore such an excellent wig no one knew it wasn’t her own hair until she was recovered, had her own hair back and told us all! Another friend Tessa went the other way and had fun rocking gorgeous hair colours and styles very different from her sleek bob!

PS If you do need to get a wig do not get human hair. Too hard to upkeep and not worth the expense. Something I learned from my research 😊 Tattoos help if you lose eyebrows and/or eyelashes.

Wishing you and your son the best ❤️‍🩹 Folfiri worked for me 🙏
https://www.cancerresearchuk.org/about-cancer/treatment/drugs/folfiri

Yes!!!! That’s exactly it! Thank you for putting it into words. I am so glad it worked for you! I think they are less positive on me because they said its a very aggressive strain and not acting like colon cancer. It went into my pelvic region on my vaginal cuff and lymph nodes. They weren’t tracking that because only 1% of people get it there. Its right side colon cancer to boot which is harder to overcome they say, also not the normal. I just have to be extra is all. Thats what I tell them. My Doctor cried more than I did with my visit when they were informing me that it was back and what our plan is. Folfiri was not her First choice but it was the only choice. What side was yours on may I ask?

@myjiggers1 I am so sorry to read this and I pray that Folfiri will push you into remission 🙏

Mine was also right side. It started in my appendix and spread. Folfiri was my first line. Folfox would have been my second line if needed. You’re doing it the other way around. I then had HIPEC once the Folfiri and Avastin had done their thing. Folfiri is also going to be very rough on your digestive system with usual side effects being diarrhoea and sores in your nose and mouth. All manageable with your team 🙏🌺 I now get whole body CT-PET scans every 4 months plus a suite of blood tests 🙏🌺