OK, according to my research, limited though it obviously is, 20% of people on cyclophosphamide (low dose) lose their hair. 100% of those on high dose cyclophosphamide will lose their hair. All the reading material I have seen on the stuff includes 'possible hair loss' in the side effects list. I've had three weeks of it now, at 750 mg every Tuesday, orally. (fifteen 50 mg pills, and those things are approximately the size of my neighbor's kiddie pool). I'll take my fourth dose tomorrow morning. I'm also taking dexemethasone and Velcade.
Have I lost my hair yet? Nope. Not a strand, not a lock, not a follicle going AWOL, nada. What it HAS done is turned into monster hair. Dry, straight, going every which way but where it's supposed to--just lots and lots of thick straw up there that looks like the tumbleweed I was dragged backwards through ... that a few weeks ago I dyed burgundy in a gesture of bravado that I rather deeply regret. Not quite as much as I would have regretted dying it purple, mind you, and at least I drew the line at pink and blue highlights! My niece tried really hard to talk me into those.
So, here's the question.
Is 750 mg per dose per week 'low dose,' or 'high dose?" Or am I like Goldilocks and missing the 'just right' one?
With my luck, when my daughters take me to Disneyland next weekend (they are coming down from Utah to do that...never mind, long story) and my hair will fall out and decorate the park as I merrily ride the fat mobile between Pirates of the Caribean and "It's a Small World."
So. Is it? Should I shave it and put me out of my misery, or chance it?
help?
Forums
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Cytoxan (cyclophosphamide) and hair loss
I started losing my hair after high dose of Cytoxan administered to me overnight in the hospital prior to my stem cell transplant. It took a week or two but my hair started coming out. I said screw it and just had it shaved. No big deal. Its grown back just fine after all the chemo and the stem cell transplant. I'm now in remission after a year. Its your call.
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coop223 - Name: derek cooper
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: November 2011
- Age at diagnosis: 57
Re: Cytoxan (cyclophosphamide) and hair loss
I was on cyclophosphamide, Velcade, and dexamethasone (CyBorD) for induction, which, for me, included Cytoxan on days 4, 11, 18,. I went through 5 cycles of this. Although I am not absolutely certain, I think it was 600 mg on each of those days. But at 600 mg, there was no hair loss. It was not until the high dose Cytoxan via IV as prep for stem cell harvest that it caused me to lose hair. It was a little over two weeks before it started falling out.
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Andy D - Name: Andy D
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2010
- Age at diagnosis: 51
Re: Cytoxan (cyclophosphamide) and hair loss
I never lost my hair when I took cyclophosphamide. Sorry I dont know the dose I was on. During my multiple myeloma journey I have lost my hair 3 times, the first time it took 17 days to start falling out. Prior to it falling out my scalp would get very sore. You might be keeping your hair for a while yet.
All the best,
Libby
All the best,
Libby
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LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: Cytoxan (cyclophosphamide) and hair loss
My dad just had his ninth week of Velcade / Cytoxan / dex. He gets 550 mg Cytoxan and has not lost his hair.
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MMdaughter - Name: MMdaughter
- Who do you know with myeloma?: dad
- When were you/they diagnosed?: Jan 2013
- Age at diagnosis: 67
Re: Cytoxan (cyclophosphamide) and hair loss
I got cyclophosphamide on April 18 as the start of the mobilization of my stem cells for collection prior to my auto stem cell transplant, which will be sometime during the week of May 13. I got my hair cut very short prior to getting the cyclophosphamide. And every morning recently, I've been checking my pillow expecting to see clumps of hair, but it's still stuck to my head so far. However, this morning when I rubbed my hand on my face, it sure felt like there were fewer whiskers to shave than I'm used to. So maybe the hair falling out is imminent.
One good bit of news – I started the stem cell collection yesterday and, much to my surprise, I produced all I needed in that one session.
One step at a time ...
One good bit of news – I started the stem cell collection yesterday and, much to my surprise, I produced all I needed in that one session.
One step at a time ...
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Cytoxan (cyclophosphamide) and hair loss
I guess I'll do the 'wait and see" thing, and try some hot olive oil treatments or something to make this bright red hayfield I'm sporting a bit more manageable. 
To be honest, I don't think I'm going to mind losing my hair when I do (and I guess it's a sure thing come the bone marrow biopsy) I mean, really ... there are some REALLY fun wigs out there, and I do love hats.
Of course, that said, I didn't think that getting new teeth would be all that big a problem, either ... and about THAT process, er ... yeah, that's not fun at all. Even though my smile IS absolutely great these days!
To be honest, I don't think I'm going to mind losing my hair when I do (and I guess it's a sure thing come the bone marrow biopsy) I mean, really ... there are some REALLY fun wigs out there, and I do love hats.
Of course, that said, I didn't think that getting new teeth would be all that big a problem, either ... and about THAT process, er ... yeah, that's not fun at all. Even though my smile IS absolutely great these days!
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Cytoxan (cyclophosphamide) and hair loss
Hi Diana,
Why you lose your hair is not fun but the wigs and hair extensions you can get are. Picture purple plaits, long flowing curly red head, the blond wasn't so good on me, brown plaits and a multi-coloured clown wig .I used to wear a handband that had two buttons on either side off it under a hat and then I would loop the plaits on to the buttons 
.
When I did lose my hair I found that my head was really sensitive so any wool beanies I would sew in a bit of really soft polar fleece (the stuff they sometimes use for babies blankets). It made the beanie warmer too. If you do lose your hair you might find that you are colder at the back of your neck, I hope you have plenty of scarves. I have ended up with a drawer full of polar fleece hats and matching scarves that I have made.
Treatment might take your strength (sometimes) but it cant take your sense of humour.
All the best,
Libby
Why you lose your hair is not fun but the wigs and hair extensions you can get are. Picture purple plaits, long flowing curly red head, the blond wasn't so good on me, brown plaits and a multi-coloured clown wig
.I used to wear a handband that had two buttons on either side off it under a hat and then I would loop the plaits on to the buttons . When I did lose my hair I found that my head was really sensitive so any wool beanies I would sew in a bit of really soft polar fleece (the stuff they sometimes use for babies blankets). It made the beanie warmer too. If you do lose your hair you might find that you are colder at the back of your neck, I hope you have plenty of scarves. I have ended up with a drawer full of polar fleece hats and matching scarves that I have made.
Treatment might take your strength (sometimes) but it cant take your sense of humour.
All the best,
Libby
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LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: Cytoxan (cyclophosphamide) and hair loss
Quick update. I wrote 4 days ago that I had not started to lose my hair yet after getting cyclophosphamide on April 18. Well, my hair is definitely falling out now. I had gotten it cut quite short in anticipation of this. Now it looks like a deranged army boot camp barber got ahold of my head.
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Cytoxan (cyclophosphamide) and hair loss
Hi Mike,
Thanks for the update.
What dose of cyclophosphamide are you taking, and how often?
Thanks for the update.
What dose of cyclophosphamide are you taking, and how often?
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