folfiri and hair loss?

[daddys1]

My dad's oncologist is starting him back on chemo next week. He was on folfox before, and did okay with it. He had some pretty weak days, but worked through that whole process for the most part. His oncologist had said he was going to start him on folfiri this time, but my dad was really weary of a new drug, and wanted to give folfox another try. I had read several stories about folfiri being stronger than folfox, and that it may would make the hair fall out easier. My dad had very little hair loss before, only a little thinning. He is very self consious of his hair, and it would be devastating for him if he were to lose it. I told him I think it varies from person to person, but that I would post the question , and see what resonses I got. I am mainly just curious about your experiences with folfiri vs/ folfox? What were the pros and cons for you? Thanks.

[Ashlee H.]

I asked this question about a month ago. I was on FOLFOX and lost about 1/3 of my hair. I'm set to start FOLFIRI on the 11th. The replies I got was the majority lost enough hair that they felt better shaving their head. There are a few that just had thinning. I just got myself a cute little hat and plan on tying different scarves on it or use fancy pins for decorations. I'd rather be bald and fighting cancer than in the ground with a full head of hair. Your dad will adjust...we all do. We all hate it, but we find a way to deal with it. My biggest issue with being bald is that it is an obviously sign for a woman that she has cancer.

Ashlee

[beachmom]

Lost all the hair on my arms and my legs but the hair on my head went nowhere. I guess everyone is different....

[surfingon]

For my husband, as for most patients, the Folfiri came after the Folfox. John's main complaints with Folfiri were extreme tiredness and the lowered white blood cell count that required Neupogen shots. Really, the Neupogen shots were the deal-breaker for him-- he said the pain from the shots was far worse than the side effects from the chemo. He did have some hair thinning, but definitely did not lose it all. He already had significant peripheral neuropathy, which worsened with Folfiri, but there is no way of knowing if the neuropathy worsened because of the Folfiri or whether it would have continued to worsen anyway.

Ashlee has really put the hair loss issue in perspective with her comments; if hair loss is the worst thing that happens to your dad, he'll be doing very well compared with most patients. When you consider the alternative...

From my perspective as a caregiver, I realized that many of the things that I thought would be unbearable for John ended up barely being blips on his mental screen. Even after 40 years of marriage, I was continually amazed and inspired by how philosophical he was about issues that I thought would be completely devastating.

Blessings on your journey,
Rachel

[Kathryn in MN]

I did FOLFOX first time around. Obviously it didnt quite finish the job, since I now have a second time around.

I've only had one round of FOLFIRI w/Avastin so far. But it has been a LOT easier for me to tolerate than FOLFOX. My blood counts are better so far too. I would not want to repeat the same chemo that didn't do the job. It did do well enough to trick us into thinking I was cancer free for a couple months. So it is left in our bag of tricks if I need something to help keep it under control and keep me alive. But really that is all FOLFOX did - keep me alive. Those 7 months were the worst 7 months of my life. I really don't want to repeat it if I don't have to.

I'm not sure why someone would want to repeat a chemo that didn't finish the job if there was something else to try that just might get them to the point of NED.

Although most people don't lose their hair on FOLFOX, I lost 9/10 of mine. I haven't lost any yet on FOLFIRI, but it has only been two weeks that I've been on it. My scalp does have the sunburned feeling it got with FOLFOX, so I think it is only a matter of time till it starts to go.

Truly with all the awful side effects we get from chemo, and the awful things cancer does to us, losing hair is not that big a deal in the big scheme of things. And so many men are bald in our society that it is usually just the women that have a real hard time with losing their hair.

I don't have a clue what you mean by FOLFIRI being stronger than FOLFOX. That statement doesn't really make sense to me. Everyone reacts differently to different drugs, but for the most part the majority has more trouble with FOLFOX than with FOLFIRI. And hair loss is no measure of how strong a drug is, or if it is working or not. Either chemo causes fatigue. On either treatment you can have trouble with constipation or diarrhea. On either chemo you can have other side effects.

I agree that I'd rather be bald and alive, than 6 feet under with a full head of hair. Worrying about hair seems silly when we are worried about staying alive... Yes, it is an adjustment if you lose it, but not that big of a deal in the end.

[daddys1]

I wanted to thank everyone for their replies, I am going to print them off for my dad.. I wanted to make sure everyone knew the hair issue was not one of mine, I would much rather have my dad here bald, then gone with all his hair. For him it has been a major issue, I remember when all this started, that actually was one of his dealbreakers for even starting on any type of chemo. I assured him I had read that most likely he would not lose all his hair on folfox. It all sounds very vain, and my dad is actually not like that at all. I wish you all could see him, his hair is fully grey, already very thin on top, and his favorite outfit is his famous white t shirt and camo pants- he is an old country boy. I have begun to realize I don't think it is actually the "hair" issue, he puts alot of emphasis on that, but I think he sees that as one thing he may have some control over, when everything else seems out of control- the one thing he can try and hold on to. I am gonna make him aware of the pros and cons of folfiri, I really think he needs to give it a go, since folfox only helped while he was on it, once he was off it actually only took a few weeks for his cea numbers to start rising again. Thanks so much, I can always count on this board to help me with all of our questions.

[Terry]

I didn't lose any hair with folfox. With folfori (or whatever it's called with xeloda) my hair started by breaking off and then I would have handfulls. NOt handfulls like you see on TV that were huge amounts but they were big enough. Apparently I have very fine hair but aLOT of it because it took almost until I was through before it got so thin and straggly that I had to shave it.

The worse part of folfori is the couple of days you get gas pains (get beano or gasx) and diarrhea (immodium or lomotil). I had 3 or 4 days like that a round, the other days I felt pretty good. I was A LOT LESS TIRED on folfori than on folfox, so that's a plus and hopefully your dad gets the same result.

He's in my prayers.
Terry

[eve]

My dad is on Folfiri and has not lost his hair. A little thining maybe but nothing dramatic in that department.
good luck!

[jenfer71]

With folfox I lost very little hair. With folfiri I lost about half (thankfully I have very thick hair) and had some bald spots randomly on my head. With folfox I was never sick...with folfiri I was constantly sick. Everyone is definitely different as you can tell by the posts. Hope it all works out for him!

[gafriend]

My cousin lost the hair on his legs but still has his head hair. Other than a metallic taste in his mouth the day of chemo and having to take prescription iron pill as well as injections, he hasn't had as many complaints with folfiri as with folfox. Good luck to you and your dad.

[LeeT]

I have been fortunate and have tolerated FOLFIRI (with avastin) very well- no gas or diarrhea. I do have the metallic taste and slight nausea and a bit of fatigue. I have also had a nosebleed every day- does not last long but there is still bleeding everyday- from the Avastin I think. I did lose all my hair on FOLFIRI (my hair broke off in handfuls) and am now sporting a funky very short pixie/ army style- luckily I don't have any bald patches...my hair seems to be growing again and have got a slight mowhawk
The hair loss thing to me was the worst to deal with in the beginning but now I am fine with it and am enjoying the short style and quick hairwashes....but I do miss my long blond hair I do have a wig that I wear to work occasionally - when I feel like doing my "hair up".

I hope your Dad's chemo treats him well..