Hair loss from Irinotecan

[LMighty]

Hi friends,

Last Friday saw my mom's second cycle of Irinotecan + Erbitux. X-ray showed slight reduction of remaining pleural fluid so the drug seems to be working. The cycle was meant to be done on Wednesday but my mom's WBC dropped from 4.4 to 2.0 -- scared us a bit but our onc said it's totally expected. So my mom was given filgrastim injection and it took only two days for WBC to return to around 4.

Side effects are still very manageable, at least compared to Oxaliplatin. Her hair seems to be falling though as today my mom woke up with a few strands of hair in her mouth and on the pillow. She expected the hair loss to happen around the second or third cycle but still cried a bit when it actually happened

Here is my question -- is Irinotecan-induced hair loss a gradual process, or you may lose much hair at once, like overnight? Does hair still grow during chemo?

Thanks in advance for sharing your experiences.

[KElizabeth]

I lost my hair the 2nd treatment over three days. I shaved it short when it started coming out in clumps it was less traumatic and less messy that way. I was bald as a baby's butt in a weeks time. Within 2 months I had not a speck of hair on my body. No eyelashes no nose hairs. Nothing!
Now 19 months In I am getting my hair back. My eyelashes and eyebrows came back first. Now my head is covered in baby fuzz and real hairs are popping up. I hate to get too excited about it because it could leave again at any time.
I guess it's anyone's guess if, when or how a person will get alopecia from Iriotecan.
I hope treatment is manageable and effective for your mom.
Best wishes!

[DebZ]

I've been on Folfiri for a year and a half and still have about 1/2 my hair. It's super thin and fragile and I've cut it to my chin now, but I have it! I use Nioxin shampoo and conditioner, and shake on hair fibers in spots that are really thin. I guess I'm trying to say that everyone is different so don't go shaving her head too soon!

[PeterG]

This is interesting--I am changing chemo to Folfiri in a week, and my oncologist told me that I would probably not suffer hair loss. Does anyone know whether hair loss is to be expected in all cases--I have a rather full beard, and from what I am reading here, it may be a good idea to shave it off before I start.

[PeterG]

This is interesting--I am changing chemo to Folfiri in a week, and my oncologist told me that I would probably not suffer hair loss. Does anyone know whether hair loss is to be expected in all cases--I have a rather full beard, and from what I am reading here, it may be a good idea to shave it off before I start.

[LMighty]

I lost my hair the 2nd treatment over three days. I shaved it short when it started coming out in clumps it was less traumatic and less messy that way. I was bald as a baby's butt in a weeks time. Within 2 months I had not a speck of hair on my body. No eyelashes no nose hairs. Nothing!
Now 19 months In I am getting my hair back. My eyelashes and eyebrows came back first. Now my head is covered in baby fuzz and real hairs are popping up. I hate to get too excited about it because it could leave again at any time.
I guess it's anyone's guess if, when or how a person will get alopecia from Iriotecan.
I hope treatment is manageable and effective for your mom.
Best wishes!

Hi Elizabeth,

Thanks for your reply! Our onc said us losing all hairs are very rare :O
I am also quite surprised you have been on Irinotecan for 19 months because our onc said at maximum my mom could only do around 8 cycles (every other week) conventionally. But then some of the forum members have been through tens and even hundred of cycles on the same drugs so I guess it's not really an exception.

Wish you well!

[LMighty]

I've been on Folfiri for a year and a half and still have about 1/2 my hair. It's super thin and fragile and I've cut it to my chin now, but I have it! I use Nioxin shampoo and conditioner, and shake on hair fibers in spots that are really thin. I guess I'm trying to say that everyone is different so don't go shaving her head too soon!

Hi DebZ,

Glad to know that you keep much of your hair!

[KElizabeth]

I lost my hair the 2nd treatment over three days. I shaved it short when it started coming out in clumps it was less traumatic and less messy that way. I was bald as a baby's butt in a weeks time. Within 2 months I had not a speck of hair on my body. No eyelashes no nose hairs. Nothing!
Now 19 months In I am getting my hair back. My eyelashes and eyebrows came back first. Now my head is covered in baby fuzz and real hairs are popping up. I hate to get too excited about it because it could leave again at any time.
I guess it's anyone's guess if, when or how a person will get alopecia from Iriotecan.
I hope treatment is manageable and effective for your mom.
Best wishes!

Hi Elizabeth,

Thanks for your reply! Our onc said us losing all hairs are very rare :O
I am also quite surprised you have been on Irinotecan for 19 months because our onc said at maximum my mom could only do around 8 cycles (every other week) conventionally. But then some of the forum members have been through tens and even hundred of cycles on the same drugs so I guess it's not really an exception.

Wish you well!

Iriotecan can be administered until the tumors become resistant which can be quite a long time for some people.
Oxaliplatin on the other hand is limited by toxic buildup in the body so many people can't get much more than 8 to 12 rounds and it rarely makes one loose their hair.

Looking the hair sucks but I've found tons of cute hats on etsy and I don't have to shave anymore. There's always a positive.

[teri3]

I lost most of my hair on Folfiri but it was a gradual thing my the 11th treatment I had lost about 80 percent of my hair. I never shaved it but cut it super short. I'm 5 months since my last treatment and my hair has grown back so it looks like a short cut.
Teri

[GrouseMan]

For my wife it thinned quite a bit but it didn't fall out in clumps. She ended up getting a wig anyway that she wore that actually looked very much like her normal hair. Most didn't notice the transition very much. But I think its going to depend on the individual a lot. She tolerates Chemo very well it seems.

Regards,

GrouseMan

[GrouseMan]

For my wife it thinned quite a bit but it didn't fall out in clumps. She ended up getting a wig anyway that she wore that actually looked very much like her normal hair. Most didn't notice the transition very much. But I think its going to depend on the individual a lot. She tolerates Chemo very well it seems.

Regards,

GrouseMan