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Daughter (9) in maintenance stage ALL - Hair questions!

3 Nov 2016 04:45

Hi All, I am new to the community and after searching forums wondered if anyone has had a simiar experiance - my dd was diagnosed with ALL in May 2015. She is currently well into the maintenance phase and, since dec, her hair had grown back very thick and beautiful... however, as of 3 months ago, it has started to fall again and is now at the point of her needing to once again wear scarves.

My question is, has anyone else experianced this much hair loss during maintenance phase after regrowth? She is finding it very distressing this time around as we were not expecting so much to fall, thin yes, but not complete loss again!.... is this what she can now expect until treatment finishes (July 2017)? Its so hard to give her an answer as i can't get my head around why when the treatment has been the same since dec, the hair grew but has now mainly gone again!

Hope that makes sense? Thanks so much for reading, This has been the hardest 18 months of our lives.

Re: Daughter (9) in maintenance stage ALL - Hair questions!

4 Nov 2016 06:47 in response to Lisamc



i saw that no one else had replied and even though our circumstances are very different to yours, I thought I would add a comment 

You referred to maintenance and "ALL", which are not terms with which I am familiar. 


When my partner had chemo in her veins, like most people her hair dropped out. The first regrowth of hair was a strange white colour and the texture was dense and wiry. This then dropped out/grew out and the new hair was a light ginger (closer to her original colour) and had waves in it. The back of her head had ridges of hair across it. Over time these have softened. 


Alrhough the experiences are not exactly the same, what we found was that the second growth was closer to her original hair type. Obviously your experience is different, but I just hope this anecdote might reassure your daughter.  .  

Re: Daughter (9) in maintenance stage ALL - Hair questions!

4 Nov 2016 16:11 in response to BryonyO

Thank you so much for replying. I think maybe I should of  posted on the leukemia forum as she has Acute Lymphoblastic Leukemia.

I hope everything is going good for your partner and I appreciate the response.


Re: Daughter (9) in maintenance stage ALL - Hair questions!

5 Nov 2016 15:27 in response to Lisamc

Hi Lisa, welcome to the forum, but so sorry to hear that your young daughter has cancer. Having a child with cancer in my mind would be so difficult and I can't imagine what this must be like for you. I can't speak to the issues your daughter is having with her hair, but I wanted to let you know that people on this forum are very caring and supportive. Anytime you feel the need for emotional support, or just a place to vent from the emotions of caring for your daughter, come on here and other forum members understand. Perhaps your daughter's treatment team can answer your questions about her hair. To a young girl, I'm sure this is a very important issue for her. My heart goes out to her and to you, and your family as you take this journey with your daughter. I hope that all goes well for her as she travels a road that no one would ever want to be on.

Take care and sending hugs to all of you.


Re: Daughter (9) in maintenance stage ALL - Hair questions!

5 Feb 2017 14:58 in response to Lisamc


Sorry to hear about your daughter. I currently have ALL also. The effect treatment has on people's hair depends very much on each person and how their body respondes to which ever treatment they're having. 

However, I lost all my hair in my second month of treatment (February 2016). It then began to grow back very thin over the course of three months. I believe it was very thin and patchy as I was still going through chemo. In June I had high dose chemo and radiotherapy in preparation for a stem cell transplant and lost all my hair again. 8 months post transplant and my hair is thick all over and stopped falling out! 

So it's possible your daughters hair may continue to grow then become thin again, depending on her treatment. I completely understand how distressing and upsetting it can be. Please tell her from me, that her hair will one day come back for good. And I'm sure she looks absolutely beautiful with out it anyway. Sending your family all the luck. 

Also, she may be interested in the Look Good, Feel Better scheme. Google it - it gave me the world of confidence. 


Re: Daughter (9) in maintenance stage ALL - Hair questions!

4 Sep 2017 23:50 in response to Lisamc

My 15 year old daughter also just finished her mainanence phase of leukemia in July. In June her hair started to suddenly fall out again. It's been devastating. It's still very weak and she has many bald spots. I don't know why this happened to her especially when her hair was growing and getting so strong when she started her maintanence phase. Have you found out any answers? Has your daughters hair started to grow back? It's been so stressful. 

Re: Daughter (9) in maintenance stage ALL - Hair questions!

11 Sep 2017 15:10 in response to Lisamc

Hello, Thank you for posting on this topic. My son was diagnosed when he was 11 and has been in treatment for two years and two months. At about the two year mark he had a couple of back to back viruses and a sinus infection, and, subsequently, experienced terrible bone and muscle pain with that round of steroids and vincristine, and that's when his hair started to fall out, again. He hasn't completely lost his hair, but it is rather thin and continues to fall out. Did your daughter's hair continue to fall out over the remainder of her last 8 months of treatment, or did it stop falling out and grow back? My son has been very sensitive to all the treatment, did your daughter experience many ill side effects? Congratulations on being done with treatment. Could you share a little of what that feels like? My son has another 14 months of maintenance left. Thank you. 

Re: Daughter (9) in maintenance stage ALL - Hair questions!

12 Sep 2017 02:49 in response to Quinn04
Thank you for your reply. My daughter had a lot of tingling and pain in her feet and hands shaking. Also a lot of stomach aches. That is all gone now. The problem with her hair only began after her last two treatments. Now after being completely done with her treatment for a month and a half her hair is still very weak. She has some bald spots but hopefully it will get better soon. She is wearing hair extensions which probably doesn't help. It's so hard to be patient and the side effects are so upsetting. I still think my daughter is trying to figure out who she is now if that makes sense. Good luck to you.

Re: Daughter (9) in maintenance stage ALL - Hair questions!

21 Nov 2017 14:16 in response to Lisamc

Hi, i have the same problem with my son. He is in maintenance cycle now and his hair fall up to very thin and regrow again.

One thing noticeable during his hair loss is that he will lose his appetite

He is 4 now

Re: Daughter (9) in maintenance stage ALL - Hair questions!

22 Nov 2017 17:28 in response to Romzi
Thank you for your reply. It's so strange. I don't understand why it happened. My daughters last treatment was July 30 and it is starting to regrow but it's still pretty weak. My daughter is 15 and it's been very upsetting to her.

Re: Daughter (9) in maintenance stage ALL - Hair questions!

30 Dec 2017 16:55 in response to Quinn04
Hi Quinn04, hope your son is doing well. I'm having the same issue with my 5 year old son. He is in maintenance therapy for ALL he has a few more months of treatment left and out of nowhere I noticed a few days ago his hair is starting to fall, it's NOT falling in chunks as it was in the beginning but it breaks my heart to see this happening again, because he in 5 now and understand, it's not as in the beginning that he was too little to care. My question is did your son loose it all again or was it just thinnig ? Did it resolve ? Please I really need some insight because this has me very concerned. Thank you

Re: Daughter (9) in maintenance stage ALL - Hair questions!

30 Dec 2017 17:17 in response to laujust

Hi Laujust,


My 15 year old daughter also had the same problem, I posted about it too. She lost about 60% of her hair again. It happened during her last two chemo treatments during  maintanence. Once she was done with chemo the hair loss pretty much stopped but her hair was extremely weak which had. Even a tough situation for her since she wears hair extensions. The doctors had no answers for me. It's now been 5 months that she has been off chemo and it is definitely growing back again.  

Re: Daughter (9) in maintenance stage ALL - Hair questions!

30 Dec 2017 18:18 in response to sukey

Thank you very much for your answer Sukey. 

I really appreciate it was your daughters hair falling in chuncks or was it hair by hair? In my son situation this just started a few days ago it's just so hard for us since he is almost done with treatment with only a few months to go we were definitely not expecting hair loss now. I just don't understand he has been on the same medications and treatment all maintenance and nothing like this happend and when I read about it I see people say vincristine can cause hair loss but he's been on it since the beginning . 

Re: Daughter (9) in maintenance stage ALL - Hair questions!

30 Dec 2017 21:03 in response to laujust
Laujust, My daughter was also in vincristine and I believe that is what caused the hair loss. It doesn't make sense because like in your situation my daughters hair had been growing back the entire time during maintenance. It was just the last two treatments that this happened. Very devestating It wasn't the same as when she started treatment and lost all her hair so fast. The best way to describe it is as extreme shedding. Lots of hair loss when she brushed her hair or showered. Plus her hair got so weak that it just broke off. I would say that within a month of finishing treatment her hair was already starting to grow back and strengthen but you know how it is. It's like starting all over again. I hope this helps and congratulations on almost being done with treatment. I can tell you my daughter feels so much better now that she is off all chemo.

Re: Daughter (9) in maintenance stage ALL - Hair questions!

30 Dec 2017 21:45 in response to sukey

Thank you so very much I cannot thank you enough for your answers. As you know this is a very difficult road for us parents needs less to say for them as well. 

You daughters  situation sounds a lot like my son, his doctor did say that vincristin can defenetly do that to your hair and he did say that he has seen it happen in other kids  were a few short month to finish treatment and they lose hair. With my son he has a lot  of hair and thick hair but I defenetly see the EXTREME shedding as you described. I'm just praying that it holds on for this few month he has left because it would be very hard explaining to a 5 year old that he will all the sodden loose his hair, specially with school it breakers my heart that other kids or people could look at him differently because of it.