Hair Loss

Unknown
Unknown
edited July 2018 in Lymphoma (Hodgkin and Non-Hodgkin) #1

Okay . . . so I realize chemotherapy affects everyone differently; so I know what comes as a side effect for one person may not be the same side effect for someone else.  BUT, we were told that hair loss was pretty much a "given".  Terry's first chemo was May 24th and, so far, he's been sparied. 

Anyone else, after that first hit, lose theirs?  If so, how many days did it take before it started falling out?

Also, if we haven't seen much of anything yet . . . does this stuff generally just take a while to "build up" cumulatively and then start up?  If that's true . . . about how many hits of R-CHOP did it take before things started creeping up?

Just curious. 

You know something else?  When we were at the chemo clinic last month, there was a gentleman "next door" who was talking to some of the nurses about how "Family just doesn't get it".  Terry and I are trying to be really open with each other about how this is all affecting us and how each of us have their own kind of suffering to do; but, I so wanted to open that curtain next to us and ask that guy, "Well, have you told them?"  If they aren't "getting it", why not share what it is you want them to?

Not everyone, I know, has as close a relationship to their spouse family as the next person may . . . but if you want or need someone to understand something, I think it unreasonable to expect that they can read your mind or jump inside your skin to feel what you feel so they can give you what you may need from them, right?

I'm also curious as to how many Non-Hodgkins, B-cell lymphoma patients, who've had R-CHOP have had success with it and didn't have to go the route of SCT.  If it failed you, what sort of ramped up chemo was necessary to prepare for the transplant was required?  The acronym for it and what drugs are used, I guess, is what I'm looking for.

I'm sure many of you have figured out by now that I'm verbose and a little annoying with all my questions . . . but I'd like to think my questions are as therapeutic for you to offer information in answering as it is for me in asking them.

Thanks again to everyone.

 

P.S.  I would still like to share my own story with the slight brush I had with my own cancer scare.  Something else for you to look forward to, right?

Dawn

Comments

  • illead
    illead Member Posts: 884 Member
    edited June 2018 #2
    Hair loss

     

     Thought this may be of interest to you, because I had no clue either. Bill did not lose his hair with Bendamustine because as the oncology nurse told us it does not attack the hair follicles. I believe most chemos do but there are evidently other ones besides Brenda that don’t, not sure about that. When Bill commented to his oncologist about his hair not falling out, he said “oh I can make your hair fall out if you want!“ I think that the oncology nurses can give you a good idea, maybe even to the day, when his hair will fall out.

    Becky

  • Anaid2160
    Anaid2160 Member Posts: 20
    #3
    My hair started falling out

    My hair started falling out in big clumps after my 2nd round of rchop. It started coming back in soon after my 6th and final round of rchop. I now have a full head of curly hair. I started taking a hair and nail vitamin supplement after last round of chemo in November.

  • Unknown
    Unknown
    #4
    Anaid2160 said:

    My hair started falling out

    My hair started falling out in big clumps after my 2nd round of rchop. It started coming back in soon after my 6th and final round of rchop. I now have a full head of curly hair. I started taking a hair and nail vitamin supplement after last round of chemo in November.

    Good to know.  Thanks, Anaid

    Good to know.  Thanks, Anaid 2160!  Just want to save Terry the shock when/if it happens.    Would you say it happened that weekend after or therabouts . . . or was it a week or so afterward?  Just curious.

  • Evarista
    Evarista Member Posts: 336 Member
    #5
    There and back

    My hair fell out after my first round.  Happy to report that a year later, it is all back!

  • yesyes2
    yesyes2 Member Posts: 591
    #6
    RCHOP hair loss

    My hair started to fall out at about 2 12 weeks.  Had it buzzed prior to the second chemo.  The sensation is strange, head felt sore and uncomfortable during the lose so it felt much better as soon as the hair was removed.

     

  • Unknown
    Unknown
    edited June 2018 #7
    Evarista said:

    There and back

    My hair fell out after my first round.  Happy to report that a year later, it is all back!

    Seems like that's the average

    Seems like that's the average . . . 14 to 19 days after the 1st round.  We are Day 14 today; so, thanks!  Will have to just wait and see but it helps to know what others have seen.

    Have a good day!

  • Unknown
    Unknown
    #8
    yesyes2 said:

    RCHOP hair loss

    My hair started to fall out at about 2 12 weeks.  Had it buzzed prior to the second chemo.  The sensation is strange, head felt sore and uncomfortable during the lose so it felt much better as soon as the hair was removed.

     

    As with the others, it would

    As with the others, it would seem that Day 14 to Day 21 may be typical.  So . . . if Terry is like most of you, it could happen sometime before we go in for Round 2 next week.

    Thanks for the info.  

    Have a good day!

  • Rocquie
    Rocquie Member Posts: 869 Member
    #9
    Hair

    Dawn, the time frame given is about right for me too. I did not shave my head nor did my hair fall out in clumps. I was very curious about this process and wanted to see it happen. My hair just started thinning. I could be working at my desk and feel hairs falling. I did have my hair cut very short so I would have short hair falling rather than shoulder length. Mornings, it looked like a puppy had slept on my pillow. 

    I actually did not lose all my hair but it was so sparse it would have looked better shaved. I just wore hats and scarves all the time. I had a wig but I hated that thing (my little granddaughter called it my "big hair").  I only wore it for errands in public, for privacy. Being a bald woman announces to the world, "I have cancer", and I didn't necessarily want my grocery cashier or bank teller to know that. 

    I think men have it a little better in that regard. They slap on a ball cap or tie a bandana a la biker and no one thinks twice. 

    Let us know what Terry decides to do. Smile

    Rocquie

     

  • Unknown
    Unknown
    #10
    Rocquie said:

    Hair

    Dawn, the time frame given is about right for me too. I did not shave my head nor did my hair fall out in clumps. I was very curious about this process and wanted to see it happen. My hair just started thinning. I could be working at my desk and feel hairs falling. I did have my hair cut very short so I would have short hair falling rather than shoulder length. Mornings, it looked like a puppy had slept on my pillow. 

    I actually did not lose all my hair but it was so sparse it would have looked better shaved. I just wore hats and scarves all the time. I had a wig but I hated that thing (my little granddaughter called it my "big hair").  I only wore it for errands in public, for privacy. Being a bald woman announces to the world, "I have cancer", and I didn't necessarily want my grocery cashier or bank teller to know that. 

    I think men have it a little better in that regard. They slap on a ball cap or tie a bandana a la biker and no one thinks twice. 

    Let us know what Terry decides to do. Smile

    Rocquie

     

    Thanks, Rocquie.  You're

    Thanks, Rocquie.  You're right.  I think guys have it slightly better, as with all other things, right?  Seems like they can get a little "chubby" and it's perfectly fine.  But, when we gals gain 5 pounds, it's like we've let ourselves go and we should have bypass surgery to correct things.  Honestly . . . it's just not fair.

    I've noticed some hair "thinning" in Terry's lovely salt and pepper "do".  Plus, the hair on his arms seems to be disappearing.  Nothing like a major loss, though.  I hope, for his sake, that is the worst of that part of things.  He's always taken such good care of himself; so, for him, especially . . . once he starts seeing visible signs of all this . . . HE may just have to learn how to e-mail and use a keyboard to gain support.  He's technologically incapable so he leaves most if all up to me.  He can't even figure out how to work the Blue Ray player or our Sonos music system.  Poor guy . . . helpless in so many ways but so strong in others.  This is all so hard to watch.  I hate to keep asking him, "How do you feel today?", but I so want to know what this is like for him on the inside.  

    Will keep you posted, for sure.  We have that hair "cut" appointment scheduled for Tuesday, but I'm thinking he may just choose to go shorter than his usual almost shaved head he usually asks for.  He's almost there anyway.  

    Later!

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #11
    unknown said:

    Thanks, Rocquie.  You're

    Thanks, Rocquie.  You're right.  I think guys have it slightly better, as with all other things, right?  Seems like they can get a little "chubby" and it's perfectly fine.  But, when we gals gain 5 pounds, it's like we've let ourselves go and we should have bypass surgery to correct things.  Honestly . . . it's just not fair.

    I've noticed some hair "thinning" in Terry's lovely salt and pepper "do".  Plus, the hair on his arms seems to be disappearing.  Nothing like a major loss, though.  I hope, for his sake, that is the worst of that part of things.  He's always taken such good care of himself; so, for him, especially . . . once he starts seeing visible signs of all this . . . HE may just have to learn how to e-mail and use a keyboard to gain support.  He's technologically incapable so he leaves most if all up to me.  He can't even figure out how to work the Blue Ray player or our Sonos music system.  Poor guy . . . helpless in so many ways but so strong in others.  This is all so hard to watch.  I hate to keep asking him, "How do you feel today?", but I so want to know what this is like for him on the inside.  

    Will keep you posted, for sure.  We have that hair "cut" appointment scheduled for Tuesday, but I'm thinking he may just choose to go shorter than his usual almost shaved head he usually asks for.  He's almost there anyway.  

    Later!

    Hair

    Afraid, I know that you asked specifically about hair loss in R-CHOP, but R-ABVD contains 3 of the same drugs, and a fourth is chemically identical to one in CHOP (Vincristine v. Vinblastine), so the situation is quite similiar.  My hair all fell out two days after my second infusion.  This happened suddenly, it was not gradual at all.  Most ABVDers report a remarkably similiar time frame, and it seems from above that around 16 days after the first infusion is similiar with CHOP. Know also for comparison that EPOCH also is just CHOP, with one other drug added.

    I lost all of my eyebrows and eyelashes also, which some people lose, and some do not.  I also got tear duct inflammation for a period, and my eyes would not stop pouring water for about two days.  The nurse told me this somehow is related to the loss of the eyelashes.

    You have heard and read that most chemo side-effects clear after treatments end. This is especially true of hair loss: most people regain their hair. But the texture is often changed, and sometimes even the color.  My hair had been very coarse and wiry since birth, but after chemo it returned and remained fine and silky.  Of course, "fine" is a codeword for "thin."  Many people do lose significant thickness after treatment.

    max

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