The Leukemia & Lymphoma Society - Fighting Blood Cancers
9 Replies Last post: Nov 21, 2009 4:53 PM by LivsMadMom  
ajsmom   37 posts since
Apr 6, 2009
Currently Being Moderated

Nov 17, 2009 8:14 AM

maintenance and thinning hair...

my son seems to be losing his hair and we are 5 months into maintenance.  It was growing back so thick and even had natural highlights in it.  He wanted to get a trim and ever since then his hair seems to be thinning.  Anyone else experience this?  My son is in high school and is not happy about this.  Our doctor never told us this could happen so we were caught off guard about this.

 

My son wants to know if he loses it again will it come back right away?  Would love to hear your experiences about this.  How long did hair loss last,  if it thinned did it get thick again?  Thanks for your input.

 

Michelle

Angela E. A.   51 posts since
Apr 7, 2009
Currently Being Moderated
1. Nov 17, 2009 10:26 AM in response to: ajsmom
Re: maintenance and thinning hair...

About a month before school started this year Aidan's hair started falling out. We were 15 months into maintenance!  Freaked me out!  I couldn't believe he would start 3rd grade bald.  But then it stopped after a few days.  Around that time someone else posted, and I also asked the clinic.  Yep - some kids experience some hair loss during maintenance.  But it's mostly thinning, and Aidan's grew back just fine and thick within a week or two.  No one warned us either, and it freaked me out almost more than it did during DI because it was so unexpected and his hair had grown back in so beautifully.  Hopefully it's just a thinning, and it should grow right back in.

 

Angela

StillSarah'sMom   35 posts since
Apr 6, 2009
Currently Being Moderated
2. Nov 17, 2009 11:29 AM in response to: ajsmom
Re: maintenance and thinning hair...

Sorry, it's so difficult to be a teen and deal with hair issues on top of all the rest!

My daughter was 13/14 in LTM and her hair did thin several times during that period.  Seemed that if she got vincristine at a time her hair was going through a 'growth cycle' (onc's words) then it would tend to thin. In our case she never lost all of it, but she was very distressed by the thinning!  I feel for you, and hope that he hangs on to most of it through all the rest of treatment.

 

Patty

Mom to Sarah, OT 8/06 and doing great!

gabe   98 posts since
Nov 13, 2009
Currently Being Moderated
3. Nov 17, 2009 11:48 AM in response to: ajsmom
Re: maintenance and thinning hair...

My friend's daughter experienced that as well, it was a result of the Vincristine dose increased due to age/growth.  It didn't last long, but just to make extra sure, she went out and purchased hair thickening shampoo from her hairdresser - it is actually a shampoo used on people going bald for various reasons and it stimulates hair growth.  She used that religiously on her child until the end of her treatment.

SMS216   23 posts since
Apr 4, 2009
Currently Being Moderated
4. Nov 18, 2009 9:45 PM in response to: gabe
Re: maintenance and thinning hair...

My 4-year-old if 9 months into LTM and her hair is very thin. Like the others said, hers came back thick and curly and to me it is noticeably thin now. I don't think she or anyone else has noticed. Thankfully, she now has super curly hair, which I think, hides the thinning well.

Sara

Peter'sMum   162 posts since
Apr 3, 2009
Currently Being Moderated
5. Nov 19, 2009 1:13 AM in response to: ajsmom
Re: maintenance and thinning hair...

Peter is nearly 2 years into LTM and has never lost any hair since it grew back after DI.And what do you know, today it is all over his pillow, all over him and keeps getting in his mouth. It is falling out like mad. He doesn't care and I'm not worried, but I just found it really strange that it should happen now. He last had Vincristine 2 weeks ago, so I guess that must be the culprit.

Wierd!

Bridget

ChzDad   43 posts since
Apr 3, 2009
Currently Being Moderated
6. Nov 19, 2009 3:12 PM in response to: ajsmom
Re: maintenance and thinning hair...

Chz is on month 15 of LTM. We had the same issue - hair falling and thinning in some spots. We were told that if the chemo hits the hair follicles during the growth cycle that it will happen. His onc mentioned - "that is good. that means the meds are working". It was a big deal for my son loosing his hair. It coincided with grad pics for his yearbook HS graduation. Glad the pics turned out good with a little gel.

 

Michelle, glad AJ has started LTM. Good luck!!!!!

ChzDad   43 posts since
Apr 3, 2009
Currently Being Moderated
8. Nov 19, 2009 6:21 PM in response to: ajsmom
Re: maintenance and thinning hair...

Michelle, we are doing fine. Things are somewhat back to normal with the exception of weekend CBC's and daily afterschool nap (he has to have one due to late night HW). You would never know what happened to him unless somebody says he is on active treatment for leukemia. The only visible sign is his stunt growth - his younger brother of 4 yrs is much taller. That is okay - he is alive and well!  He does not want to talk about his medical misfortune. He is enjoying his senior year (now that he has the energy to attend weekend parties - minus staying overnight), ever busy with co-curricular activities, fund raising and crew. My heart aches as he decided not to register for the NCAA clearinghouse for an opportunity to get recruited in college for crew. He says after all that he has been thru, he deserves to enjoy life and not worry about the rigors of early morning practice for the next 4 years. He "might"  just walk on for the tryouts - at least he does not have to commit. We worry about the build up of meds in his system. It is a long road but we are very thankful that he took the treatments well. Prayers and medicine at its best. We will forever keep our fingers crossed.

 

E-mail me when you can..... n8_et@comcast.net  I am still waiting for your caring bridge site as promised.

 

Take care,

 

Noel

LivsMadMom   2 posts since
Jul 22, 2009
Currently Being Moderated
9. Nov 21, 2009 4:53 PM in response to: ajsmom
Re: maintenance and thinning hair...

We moved during LTM, from Oregon to Houston, Texas and a few months later, she started having thinning of her hair. We noticed it on her pillow, thank heavens she didn't. I had to stop and remind myself that it wasn't a symptom of her disease, just of the medicine working. It's rough and irritating though.

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