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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

Does Cytoxan for stem cell harvesting cause hair loss?

by gardengirl on Mon Jul 06, 2015 4:56 pm

Does the Cytoxan (cyclophosphamide) used during stem cell collection make you lose your hair?

I thought it only thinned it out, but now I've heard you lose it! It would be fine if the next step is a transplant, but if you are only collecting and storing, then that would be something to consider.

And, if it does cause hair loss, is there anything else that can be used instead so you don't lose hair during the collection process?

gardengirl
Name: gardengirl
Who do you know with myeloma?: Me
When were you/they diagnosed?: Nov. 2013
Age at diagnosis: 47

Re: Does Cytoxan for stem cell harvesting cause hair loss?

by Rneb on Mon Jul 06, 2015 5:31 pm

In Early April 2013 they said I'd prolly lose my thick hair, after a very large infusion of Cytoxan, as part of my collection process. ( No transplant for me) They said in 3-4 weeks, I'd know for sure. May 1st, my hair started coming out in clumps, rapidly. I shaved the rest, in a day or two and wore ball caps all Summer.

No ice bags helped me. The literature seemed to say atleast 75% lose some, or all hair, if I recall correctly.

I lost virtually all hair-- groin, arm pits, legs, chest, eyebrows, head, etc.

They also said re-growth occurs for many- in 3-5 months, but darker, coarser, etc.

It did.

I went from dishwater Blond to Brunette. No more fun as a Blond or a Brunette.

I'm still a shade or two darker--but my hair is thick and has returned all over, as before.

Sorry.

Oddly enough, when you lose your hair--people suddenly believe that you have cancer. Otherwise you look "too well" to be sick. Uggg! What goofy crap.

Good luck.

Rneb

Re: Does Cytoxan for stem cell harvesting cause hair loss?

by Bar-none on Mon Jul 06, 2015 8:21 pm

Hi gardengirl,

I started losing my hair about a week post Cytoxan as well as had violent nausea. It was more of a steady loss. I did shave also, but it was still a mess so proactive shaving is a plus.

Interestingly, I was totally gray before with straight thick hair and it came back more full, but finer, much darker and curly!!

We are all having fun with my newly found curls, but my doc says they may not last.

It's a little fun in of all this ... BN

Bar-none
Who do you know with myeloma?: Me
When were you/they diagnosed?: 3/14

Re: Does Cytoxan for stem cell harvesting cause hair loss?

by tmcd on Mon Jul 06, 2015 11:35 pm

Ditto, more or less.

No side effects or obvious anything until I woke up one morning a few weeks after my pre-stem cell dosage of Cytoxan.... and you needed a dust buster to get the hair off my pillowcase.

Pretty much it all fell out over a few days, from everywhere but my arms and legs, weirdly enough. Lost a lot from my chest, but not my belly. Didn't need to shave for maybe two weeks either. Shoulders smoother than they were since elementary school.

And me too with people noticing - folks who weren't sure I really had cancer noticed the hair loss and finally thought I was not kidding. (I tend to joke about a lot of things.)

It grew back after 6 weeks or so and looks same now as before.

I didn't wear baseball caps or much else. It is what it is. Or was. And it is not like I was Fabian in the follicle department to start with I guess.

gardengirl - women are more vain than men about hair loss perhaps, but really, it is not a big deal. The stem cell procedure is important.

Good luck with it.

tmcd
Name: TMcD
Who do you know with myeloma?: Myself
When were you/they diagnosed?: Oct 2014
Age at diagnosis: 52

Re: Does Cytoxan for stem cell harvesting cause hair loss?

by Rhonda on Tue Jul 07, 2015 7:05 am

Hi Gardengirl

I too was surprised to hear you may or will lose your hair after the high-dose Cytoxan. I spoke to my BMT about this and other issues, and at this point, I will not be administered the Cytoxan before the harvest. I am scheduled at the end of July.

The plan right now is to continue my current treatment of KRD (Kyprolis, Revlimid, dexa­meth­a­sone) through Tuesday of next week. I will then begin the Neupogen shots on July 30 and the harvest on August 3. With this I will not lose my hair, but if my BMT told me it was in my best interest to have the Cytoxan, I would certainly do it.

I too don't want to lose my hair, but I know I will when I have the transplant at the end of August.

Wishing you the best,

Rhonda

Rhonda
Who do you know with myeloma?: myself
When were you/they diagnosed?: September 2014
Age at diagnosis: 54

Re: Does Cytoxan for stem cell harvesting cause hair loss?

by KLR on Tue Jul 07, 2015 9:06 am

Hi gardengirl,

Yes, you will lose hair. My husband lost 1/2 his hair 3 weeks after receiving Cytoxan.

Ask your doctor about using Mozobil (plerixafor) if you are just collecting and not going on to transplant. It doesn't have anti-myeloma properties like the Cytoxan, but you also will not have to have as many Neupogen shots, nor will you lose any hair.

KLR
Name: KLR
Who do you know with myeloma?: Husband
When were you/they diagnosed?: November 2014
Age at diagnosis: 58

Re: Does Cytoxan for stem cell harvesting cause hair loss?

by mikeb on Tue Jul 07, 2015 11:21 am

Hi Garden Girl,

Just to follow up on a potentially important point from KLR. Cytoxan is a chemo drug. It is an alkylating agent that kills fast growing cells, such as cancer cells, hair cells and stomach lining cells. So when you get a high dose of it before the stem cell harvest, it does potentially act against myeloma cells. As well as potentially cause you to lose your hair and have some digestion issues.

In my case I did lose my hair and I did have queasiness and some nausea for several days after getting the Cytoxan.

Like others who have posted on this thread, when my hair came back, it was darker and curlier than before. I kind of liked it like that, but over time (2+ years now), it's gone back to how it was before the Cytoxan and SCT.

Rneb makes a good point about how people respond to you very differently when you are "chemo bald." That seems to be the one sign that others look for to sense that you have cancer.

When I had no hair, it was always a shock when I caught a glimpse of myself in the mirror. When my hair started to come back about 4 months after I lost it, it was a visible, very encouraging, sign that I was improving after the SCT.

Best wishes to you. Keep us posted on how things go for you.

Mike

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: Does Cytoxan for stem cell harvesting cause hair loss?

by NStewart on Tue Jul 07, 2015 12:43 pm

I, too, lost my hair from the Cytoxan. My nurse had told me that it might start to come out about 10 days after the Cytoxan infusion. Well, right on schedule I noticed hair on my pillow. I had it all shaved off so that I wouldn't have to deal with it gradually coming out. I wore scarves when I went out more from the fact that it was a very cold, snowy January than from being self con­scious about being bald.

My hair started to grow back about 3 months later and was about 1 inch long by 4 months when I stopped covering my head at work. Mine came back exactly the same color, but very curly. The curls gradually went away, but I still have waves that I never had before.

I found that knowing that I probably would lose my hair and being proactive about shaving my head as soon as I noticed it coming out made me feel more in control of the situation. I really didn't mind being bald.

Nancy in Phila

NStewart
Name: Nancy Stewart
Who do you know with myeloma?: self
When were you/they diagnosed?: 3/08
Age at diagnosis: 60

Re: Does Cytoxan for stem cell harvesting cause hair loss?

by caregiver on Tue Jul 07, 2015 4:23 pm

My wife started losing her hair after the Cytoxan, and we decided to shave it all off. She bought several wigs and had lots of fun wearing them.

Two years later, her new hair is thick and beautiful. Many people wonder what she does to have such gorgeous hair! Even her hairdresser doesn't know!!

caregiver

Re: Does Cytoxan for stem cell harvesting cause hair loss?

by dianaiad on Tue Jul 07, 2015 5:40 pm

I was on the CyBorD regimen to prepare for my transplant, and with that my hair got dry and brittle, and perhaps thinned a bit. It was hard to tell since my hair is naturally rather thick. I could lose a lot of it without it looking 'thin.' Then, with the Cytoxan and other chemotherapy agents, I was told that I would lose my hair, and I definitely did. I'll admit that the thought of losing my hair (probably one of the only two 'claims to beauty' I had) worried me. A lot.

Then it happened, I was bald. And I dunno; perhaps there was so much else going on or some­thing that I didn't care, or else I have a great skull. I looked in the mirror and I LIKED it. I ROCKED the bald look. So all those scarves and hats (and a wig that I couldn't STAND) were put in a drawer and never taken out.

When my hair began to grow back in, about three months later, it came in snow white and CURLY; lots and lots of soft, white (mixed in with some light brown) curls. Loved that, too.

But (sigh) the curls grew out and went away, too. So now, a year and a half later, my formerly dark auburn hair that became mostly white and curly is now thick, straight ... and not a whole lot of white left in it. It's not dark auburn, either. I'm not really sure WHAT color it is. I just gave up and keep it really short.

My kids tell me I'm 'aging backwards.' Whatever. I'll have to get my new driver's license picture taken before it switches up again.

dianaiad
Who do you know with myeloma?: Me
When were you/they diagnosed?: Officially...March 2013
Age at diagnosis: 63

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