cyclophosphamide - hair loss?

[carriej22]

Hi Folks,

A young weggie found my blog; I am not sure if she is on here or not. She is 18; actually I think her mom found my blog and asked me to e-mail her daughter which I did. She does not want to go on any treatment as she is terrified of many things like gaining weight, etc etc. I know this is hard to make sense of - but she is young and I can feel where she is coming from.

Obviously, at her age she is also scared of losing all of her hair. Does clyclophosphamide cause hair loss? I never had it, and was treated with RTX, MTX and imuran so I can't comment on it.

[pberggren1]

Tell her to join us here.

[carriej22]

I passed it along; but I will pass it on again... There are some people who have gone through a lot of trouble on here and while I don't want to paint it with unicorns she is really scared, I hope the forum doesn't scare her more :(

[RudiK]

Hello Carrie, ah these youngsters, more concerned about their physical appearances than about their health.
But, about hair loss, I was on 150mg CTX for 3 months, then on 100mg for another 3 months, and from then on on Imuran. I did not notice any hair loss.
Like Phil said, ask her to join us.

[drz]

Hi Folks,

A young weggie found my blog; I am not sure if she is on here or not. She is 18; actually I think her mom found my blog and asked me to e-mail her daughter which I did. She does not want to go on any treatment as she is terrified of many things like gaining weight, etc etc. I know this is hard to make sense of - but she is young and I can feel where she is coming from.

Obviously, at her age she is also scared of losing all of her hair. Does clyclophosphamide cause hair loss? I never had it, and was treated with RTX, MTX and imuran so I can't comment on it.

I wonder if she knows that 30 years ago Wegs usually resulted in death in less than a month. Treatment is important to maintain your health.

[carriej22]

I know; I spoke to her a few months ago the first time and I convinced her to get treatment. She sent me another line last night and she is now speaking with her doctor for treatment options. I don't know who her doctor is or any of that...

[annekat]

Oral CTX at the doses we take does NOT cause us to lose all, or even most, of our hair. At my age, my hair was already thinning. CTX made it thin more, but that stopped as soon as I quit taking it. It was never thin enough for people in general to notice it. I'm now on MTX along with folic acid, and there is no more thinning going on; if anything, I've noticed it getting thicker.

As for weight gain, pred face, and others, those seem to be highly variable from one person to the next. She may have problems with these things. But they are a lot better that what would happen if she does nothing! Really, things could be much worse than having to go through standard treatment for Wegs.

[carriej22]

I feel like she is getting IV treatment as she mentioned IV. However I have e-mailed her and asked her for clarification. I know absolutely nothing about CTX.

[annekat]

I think CTX does pretty much the same thing as MTX, it is just stronger and harder-hitting and known to be more toxic. I never had infusions, though, just oral. I've heard oral, taken continuously, is more effective than infusions but also more potentially toxic.

[marylz]

I am losing lots of hair, which is sort of distressing, but like others have said, I will deal with that if I have to...it more important to get better. I also agree with carriej22 that this forum may scare her, being that she is so young. I know that a lot of it scares me and I'm much older than she is. I also believe that more knowledge is power...and I'll only take in what I can handle at the time. We shall see.

[Pete]

I took oral ctx (100-150 mg/day) for about 16 months with no hair loss. I've been on 15 mg/week of mtx plus 1 mg/day of folic acid for about 8 months. My hair does not seem to be thinning, but is getting a little grayer and coarser. I think prednisone has had stronger effects on me with weight gain and some beginnings of osteopenia (forerunner of osteoporosis).

in my experience, active disease is much worse than proper treatment.

[sas]

I am also a new comer and considered not joining as I found it pretty depressing and scary, however, I joined with the thought ´better the devil you know´, and well whatever, one has to face this disease then get on with living with it and all its horrors, life is still sweet.

Every day is a gift, that’s why they call it the present.

[Michael Bell]

I had a 3 month course of IV and my hair thinned out a bit but has come back to full thickness. Tell her that the treatment is essential and all will be well when everything is under control..
Michael Bell

[HopeinTN]

I started with CTX orally and going on month 16. I did notice hair loss but I had plenty of hair to lose. I had rather be bald and getting treatment that have a beutiful full head of hair and be 6 feet under. It's not a walk in the park, but it's manageable.

I hope she's gettign treatment soon.

[aewaustin]

Unfortunately both times I had a CTX oral treatment I lost the majority of my hair. At the end of my latest treatment my hair stylist used a buzzer on my hair until it was about 1/2 inch long. It sucks. Period. No way around it. Tell her to take biotin to help it stay strong, but at the end it just depends. I was sick in my early 20's and back then ignorance was bliss and really helped me along. But as I am sure she realizes she does have to deal with it and information is key if you want to get through it better and smarter. Knowledge helps you get through quicker I think, instead of floundering for awhile.

[annekat]

I was on CTX about a year and did lose some hair, but not so much as for it to be obvious to people. I've always had thick hair, but am at the age where it starts to thin a bit anyway. But the difference was obvious to me during that time. I guess it has been about a year since I switched from CTX to MTX, and it has definitely thickened up since then. And I do take folic acid with the MTX, which is supposed to help with this and other side effects. I guess everyone is different and some lose more than others. But as others have said, the benefit of these drugs in treating WG outweighs any concerns about hair loss. It is not nearly as pronounced, for most people, as what cancer patients experience from their higher doses of chemo. And I think they would say the same thing, they need the chemo more than the hair in order to survive.