The Leukemia & Lymphoma Society - Fighting Blood Cancers
68 Replies Latest reply: Mar 19, 2012 1:46 PM by Tex RSS

Chemo during transplant...

Laila98 Registered Users
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Hi first off thanks for taking a look at this... I'm Laila, I'm a freshman in h/s and about to start my bone marrow allo-transplant (I think that's what they keep calling it). This might sound really really stupid but I can't find anything about hair loss with transplant, it always just talks about people going through chemotherapy for weeks and stuff... Did ya'll lose all of your hair with the transplant? Do I lose my eyebrows and stuff too? I'm sorry it might seem like a stupid thing to ask or even worry about but I can't help but wonder what's right around the corner for me... any help would be appreciated greatly! Thank you!

  • Re: Chemo during transplant...
    Susan61 Registered Users
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    Hi Laila:  I did not get a transplant, and most of us are all on the TKI drugs instead of a transplant.  We do have some, and I am sure they will tell you what they experienced.

         I am sure Trey will get on here to give you some websites or information to check out.

        I will check later to see what answers you get.

        Do not forget that their are never any stupid questions on here at anytime.  We are all filled with questions, and seeking answers on everything. Thats why we are all here to help each other.

       Have they found a match for you yet that they feel would be a good one?

  • Re: Chemo during transplant...
    CherylLynn Registered Users
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    Laila...

     

    I had a stem cell transplant (sct) last Jan 2011...I did lose all of my hair including all my body hair, but by some miraculous chance I did not lose my eyebrows or eyelashes...they thinned a bit but did not totally fall out...

    Everyone is different but I think with full chemo and radiation you are bound to lose most if not all of your hair...

     

    Hope this answers your question...if you have any more - please feel free to post them - we are all here to help

     

    Cheryl

  • Re: Chemo during transplant...
    Tex Registered Users
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    I had an allogenic stem cell transplant which is what you'll probably have.  The only difference between that and a bone marrow transplant is how they gather up the cells from the donor.

     

    I lost it all.  I not only lost my brows and lashes, I lost the hair in my nose.  Thankfully, it came back quickly but there was a short time where I wasn't filtering out much of the crap floating around in the air.  Mostly stay off of beaches and such and you'll be fine if that happens.  Like I said, it comes back quickly.

     

    The drugs they used to condition me for my transplant did leave a few bald and sparse spots permanently.  Or at least there's not much regrowth in some areas.  For me it's most of my legs and my underarms.  I also have some patchy spots on my hair so I don't wear it short or I have what I call "leukemia head."

     

    Now, I know you're young and this is probably a scary proposition to you.  Try not to let it.  For one thing, there's no guarantee they're going to use the same meds on you.  You might not get such dramatic conditions.

     

    But, even if you do, most women remove most of their hair with a razor.  If I was a woman, I wouldn't need to...just some touch up shaving on my legs.   I wear my hair long and no one can tell I have sparse hair in some spots.

     

    Most of all, I'm alive.

     

    That's all that matters.  Yes, there are things I wish were different but I couldn't have those and still be breathing today.  So, yippee!  I lost my hair.

     

    I'm sorry this has to happen to you.  It truly sux.  But, being young, you have a chance to get through this and put it all behind you.

     

    Blessings

    • Re: Chemo during transplant...
      Laila98 Registered Users
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      Thank you for the informatin, it may be harsh but I want to hear it. I want to mentally prepare myself everything and not be surprised I know myself and it will help me get through it if I know what's to come. So thank you for being so honest with me as crummy as it's going to be..  One question, your nose hairs grew back fast or all of your hair in general? alls I know is they said they are killing my entire immune system and then giving me soemone elses cells or something into me. I should probably pay more attention when they talk to me about stuff but I tend to go like blank when they talk. I try to listen but it's like an endless stair into the nothingless of my mind, so thankfully my Aunt or Uncle are there to hear it all out and process it for me.  have the terms they use i'm like what?? my aunt nods her head like uh huh uh huh but she's got no one fooled she writes it all down and sits on google looking up each word lol. She's 33 so I don't feel so dumb not knowing what it means. and i don't live near a beach so don't need to worry about that lol and hey if I lose hair perm on my legs or underarms I'm totally cool with that no more shaving sweet!!! Only place I worry about it coming back would be the hair on my head, and face features.. Thank you so much again Tex, and just so you know everytime i watch looney toons I'm going to think about you now because of your picture lol! That's awesome!

      • Re: Chemo during transplant...
        Lottie Registered Users
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        Hi Laila,

        Like the others said, my Husband Nate lost all his hair. But, also like them, it started growing back fairly quickly. About a month after the transplant it was growing in, but it was gray. So if that happens to you, don't freak out! As his hair kept coming it, it started getting color again. Oh, and it's a lot thicker, too. One fun fact for you is that it might be a different color. Nate used to have a light brown hair with a strawberry blonde beard. He now has jet black hair with a bright red beard. It's funny how that works.

    • Re: Chemo during transplant...
      Laila98 Registered Users
      Currently Being Moderated

      Thank you for the informatin, it may be harsh but I want to hear it. I want to mentally prepare myself everything and not be surprised I know myself and it will help me get through it if I know what's to come. So thank you for being so honest with me as crummy as it's going to be..  One question, your nose hairs grew back fast or all of your hair in general? alls I know is they said they are killing my entire immune system and then giving me soemone elses cells or something into me. I should probably pay more attention when they talk to me about stuff but I tend to go like blank when they talk. I try to listen but it's like an endless stair into the nothingless of my mind, so thankfully my Aunt or Uncle are there to hear it all out and process it for me.  have the terms they use i'm like what?? my aunt nods her head like uh huh uh huh but she's got no one fooled she writes it all down and sits on google looking up each word lol. She's 33 so I don't feel so dumb not knowing what it means. and i don't live near a beach so don't need to worry about that lol and hey if I lose hair perm on my legs or underarms I'm totally cool with that no more shaving sweet!!! Only place I worry about it coming back would be the hair on my head, and face features.. Thank you so much again Tex, and just so you know everytime i watch looney toons I'm going to think about you now because of your picture lol! That's awesome!

      • Re: Chemo during transplant...
        tranier Registered Users
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        BJ, 21yrs old, had his transplant Nov 2nd..His hair is coming in very nicely just the past two weeks...He did not lose eyebrows or eyelashes, but like Tex did lose nose hairs, which is. More bothersome than you think.  It did take several weeks after chemo for him to lose hair and it began in as he put it "my warm and private places"  lol....There are a lot of good books to read on the transplant process...if you don't want too, have your aunt, it helped us...You are in our prAyers..Keep your sense of humor...BJ has kept his and it WILL make all the difference!

  • Re: Chemo during transplant...
    susantheresa Registered Users
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    Hi Laila, My name is Susan and I had a allo stem cell transplant in 2005, dx was cml.  I want you to know that there are no silly questions.  I made my own decision to shave my head the night before I went in to the hospital.. A friend whom I adore came over and we talked for hours.  I then cut and then had him shave my head. It was weird at first but remember, these are personal decisions.  No one size fits all.  I will tell you that I kept a cap on that night because my head was cold.  throughout my recovery, I bought a wig and NEVER wore it.  I liked how I looked in scarves and I just collected scarfs an wore them all of the time. within 6 months my hair started growing back with this amazing texture.  Thick.  I always had poker straight thin hair and t this day it remains nice and thick.  A year after my transplant, I donated my wig which was still in the box to a Womans Breast cancer foundation here in my community.  That worked for me because I thought it would be too much on top of the chemo and stuff to lye in bed a have my hair fall out.  Personal decision, again, no one size fits all for all.  Blessings. Susan

  • Chemo during transplant...
    Laila98 Registered Users
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    thanks for the responses! I already have thick hair so that's not fun for me  I couldn't imagine even thicker hair lol. A part of me wants to shave my head becaue I know waking up with clumps of it on my pillow is going to be so extreamly emotional for me but then again I don't know if I can actually take the shavor and do it... And wow it changed colors??? umm if mine comes in grey i'm going to cry hysterically.... even if it's short term that's gonna suck... Now my hairs naturally blonde if it goes black or brown or whatever that's cool I can take a change lol.

    • Re: Chemo during transplant...
      Lottie Registered Users
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      Well not everyone gets it back gray, so don't count on that! His hair was only gray for about a month until the color started coming back. Chemo does crazy things to hair. Some people who had straight hair end up with curly hair. There is really no way to predict what will happen to it because it's so different for everyone.

      As for the hair falling out, it doesnt come out in clumps. It's a much less exciting process. http://chemosabe-socks.blogspot.com/2012/01/lazy-hair-loss.html This is a blog I follow of a young girl with ALL (which is what my husband had) who was diagnosed in December. She has an incredible sense of humor, and this was her take on the hair loss thing. Check it out, it might make you laugh a little.

      So ALL is treated differently from CML and when he was diagnosed he immediately was hospitalized for a month and got something called induction chemo to get him into remission. The day he was discharged his hair started coming out. He scratched his chin and got a little handful of hair. When he got home we took duct tape to his head and made a smiley face on the back. The rest took like a week to fall out completely.

      Transplants are tough but you're young and determined and I think you'll do just fine. Just remember that there IS a light at the end of the tunnel, because it gets pretty scary sometimes.

      Nate was diagnosed with ALL on December 22nd, 2010 and had his transplant March 2, 2011. I was actually 12 weeks pregnant with our first child when he was diagnosed with the cancer, which added to the stress. It was important for us to know that there are people who have gone through it and been okay. This site was truely a life saver for me.

      Below are a couple pictures just to show you that Nate DID lose his hair and look sick, but that he is looking healthy and back to normal now. So dont lose sight of the big picture.

       

      DSCN2195.JPG

      So above is Nate a couple weeks after coming home from his transplant, sitting with our dog Rizzo.

       

      016.JPG

      And this one was taken last weekend with our daughter Kaya. As you can see, he has hair and looks healthy overall.

       

      So keep strong girl, you'll get through this!

    • Re: Chemo during transplant...
      Tex Registered Users
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      Laila wrote:

       

      umm if mine comes in grey i'm going to cry hysterically....


      Keep that sense of humor, it's going to help you a lot over the coming months.  I did my best to laugh my way through treatment and it worked for the most part.

       

      Actually, I was really gray with a lot of white and silver mixed in, it looked good on me.  My hair decided to grow back in my original color though.  Now it's a mousy blondish brownish thing.  Blech.

       

      I think I remember my nose hair coming in a little more quickly than the rest.  Maybe I was just more focused because I wanted to stop breathing in the dust.  I forgot about how my eyelashes missing also caused issues with my eyes...lots of dust there, too.

       

      What I remember clearly is my SCT was mid-June and, by August, I was able to grow my mustache back, but not my beard.  I had stubble on the top of my head but I decided to keep it shaved for awhile as I actually liked the novelty of the look.

       

      I hear you about being depressed at clumps falling out.  I'm a guy who liked himself bald so it wasn't such a big deal to me.  What bothered me is that it looked like I had a dog shedding all over my room.   Seriously, everything was covered with hair and I still had most of it on my head (amazing how many strands of hair we have, truly).

       

      Hang in there.

       

      Blessings

      • Re: Chemo during transplant...
        Laila98 Registered Users
        Currently Being Moderated

        this might be a stupid question but did you have to cut the grey off or did it just naturally change color?? I really don't want great hair at my age but I know it'll be temporary just stinks lol. they put my cathetor in soon hopfully it doesn't hurt to bad... thank you again for responding

        • Re: Chemo during transplant...
          tranier Registered Users
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          L-

           

          BJ, 21 yrs, lost his hair twice.  Once in June during induction, then in Nov. After transplant.  Both times it has returned same color, same texture...perhaps that's another benefit to youth!

        • Re: Chemo during transplant...
          Tex Registered Users
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          Laila wrote:

           

          this might be a stupid question but did you have to cut the grey off or did it just naturally change color?? I really don't want great hair at my age but I know it'll be temporary just stinks lol. they put my cathetor in soon hopfully it doesn't hurt to bad... thank you again for responding


          There are no stupid questions.  None.  Okay?  Ask away.

           

          The picture I get from your question is like I dyed my hair gray and the roots started coming in and did I have to cut the dye off?  Nope.  It was really weird.  In fact, I don't know that I noticed my hair for awhile.

           

          I was finally able to grow the beard on my chin back out.  It came back just as gray as it was before the SCT.  I woke up one morning and it looked like I had fallen chin down into a cup of cocoa.  There was just a perfect little oval of "chocolate" right at the tip of my chin.  I happened to be going to the doc that day and asked her.  She was clueless. 

           

          It was really ugly.  But then, by the end of the week my beard was brown.  Amazing.  I looked years younger.

           

          But that's more how it happened for me.  It wasn't even that it grew back a different color but it just changed later.  This is different than a lot of folks do it, but I haven't done very typical in my procedures or recovery. 

           

          So, there you go.  See how much adventure you have to look forward to?

           

          Blessings

          • Re: Chemo during transplant...
            Laila98 Registered Users
            Currently Being Moderated

            Thank you Tex for saying there are no stupid questions... Today they said I'm getting a "Allogeneic Hematopoietic stem cell transplant (HTC)" does ANYONE know what that means? I tried googling it but I don't know what sites to trust and figured ya'll were the best to ask..

            • Re: Chemo during transplant...
              Lottie Registered Users
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              Hi Laila,

              What you are getting is what they give for transplant these days to most people with leukemia (the ones who gettransplants, that is). It is what my husband had. Basically, what they are going to do is give you high doses of chemo and possibly soem radiation, and that will wipe our your bone marrow. Bone marrow is where the stem cells are made and where the leukemia starts. From there, you will get the donor stem cells just like any other blood transfusion. They'll hang up the bag (i think it looks kind of like blood orange juice, gross, i know), and then you wwait. It'll take a couple weeks, but eventually the cells will start to "stick", aka engraft, and your blood counts will start coming up. It'll be a long recovery process, but odds are, this will save your life.

              Today is my husband's 1 year, so one year ago today he got his cells.

              We're here for you, and ask away. Like Tex said, there are no stupid questions.

            • Re: Chemo during transplant...
              susantheresa Registered Users
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              Hi Laila,

               

              I had a allo transplant.  On all of my hospital paperwork, Hematopoietic was always there in front of allo.  I never took the time to figure out what it was or maybe I was blinded by all of the information that I just forgot.  Allo is the name for a donor transplant and Auto is a same cell transplant.  Leukemis's are treaed usually with donor cells and certain other blood cancers are treated with your own cells.  Hodgkins, nhl, mds, lymphomas tend to be Auto.  Leukemia's are allo. I was transplanted in 2005 and I am here to tell you in 2012 YOU WILL GET THROUGH THIS. O.K.

              Blessings, Susan M

            • Re: Chemo during transplant...
              Tex Registered Users
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              I can't translate all of the verbiage.  Basically, a stem cell transplant is a bone marrow transplant.  The difference is that they harvest the donor's cells from his/her bloodstream.  They will give the donor a series of shots to increase the number of t-cells (stem cells) in his/her blood and then the donor is hooked up to a machine which takes blood out of his/her system, filters out the t-cells and returns the rest of the blood.

               

              Yeah, I know.  Gross.

               

              But they do this for a few reasons.  One is that it's not as invasive for the donor.  The bone marrow transplant requires them to basically poke some holes into the donor's areas with marrow and draw them out.

               

              My bag of cells looked just like a bag of blood except it looked kind of fizzy(?!).  We think we could actually see the cells but it was late, who knows?  It was dark red though, not orange.  Mine were fresh, they'd just been harvested that day and flown in from Texas.  Perhaps Nate's had preservative in them?

               

              Loosely translated "hematopoietic" just means that it's dealing with the marrow.  It's has to do with the process of making blood cells.  I'm not sure what the HTC means.  Probably something redundant if I know my medical people.

               

              I'm really glad you realize that some Internet sites will be unreliable.  We sometimes have to talk people down off the ceiling when they've read something out there on the net that's total crap.  There's a lot of good information but a lot of nonsense, too.

               

              I'm really proud that you're so interested in the process and appear to be taking it all in stride.  It's hard to find a balance but you seem to be doing it very well.

               

              Blessings

              • Re: Chemo during transplant...
                Lottie Registered Users
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                Yeah Nate's were fizzy too. His was harvested from his brother that morning, so no preservatives. It wasnt really orange so much as a reddish/orange color. Blood oranges tend to have a reddish hue to them, so that's the closest I could get with color. I think it all depends on the donor, who knows

  • Chemo during transplant...
    Laila98 Registered Users
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    Thanks guys! I wasn/t sure if it was something different or not. I'm glad you are doing so well Susan! Nice to know I have hope to look forward to : )...  Lottie tell your husband happy 1 year for me how is he feeling? Is he still recovering from it all, I'm sure he is but does it seem like recovery is getting easier?

    • Re: Chemo during transplant...
      Lottie Registered Users
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      Hi Laila,

      He is recovering well. With time, it gets easier. He was pretty yucky feeling for 2-3 months after his transplant, and since then has really just been dealing with fatigue and something called graft versus host disease. It is when his new immune system attacks his body. He has a mild case and has in mostly in his joints, which makes them stiff and painful, but that's what pain killers are for! A little bit of GVHD is actually a good thing, because studies have shown it has a "graft versus leukemia" affect, and can reduce the risk of relapse.

       

      You being so young, I think you'll do great. The doctors where Nate goes said that because he was "so young" (24 when he had his) he would hopefully have a good recovery, and that kids "bounce right back" from this sort of thing faster than adults.

       

      I just love that you have such a positive attitude, it really is half the battle and I mean that. I'm rooting for you.

      • Re: Chemo during transplant...
        Laila98 Registered Users
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        Thanks Lottie mades ma feel a lot better! Also thanks for the support : ). I'm hoping to bounce back quickly I just keep reading all this stuff and it freaks me out so i'm trying to stay off google, especially since I'm already here.. Like I can't change it now. Does or did your husband have a caringbridge page? Just wondering, I just like reading peoples past posts and what they were feeling going through it... Well mines is www.caringbridge.org/visit/lailajean if you wanna check it out :-)

        • Re: Chemo during transplant...
          Lottie Registered Users
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          Yeah I'd stay off google. To be fair I;ve done my fair share of googling and it only makes me scared and then I come here for support.

          Nate didnt have a blog or anything; he wasnt too interested in that, but if you have any questions as you go alone, about what it was like, I can ask him and relay his messages.

        • Re: Chemo during transplant...
          warrior Registered Users
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          Hi Laila

          I want to wish you the very best getting thru the stem cell transplant. My partner had a SCT about 19 months ago and she is doing very well. I also have a niece who is also a freshman in high school so I know the life you want to hurry up and get back to. I am sorry that this *** disease has knock you out of your life for a bit... but I know you can get through it... lots of the symptoms you will get from the chemo and maybe radiation you get from preparation for the SCT will be temporary.... Kathy lost every last hair on her head and  body as well as her eyelashes...Today she has a different hair texture and a very different color she went from grey to an almost blond ... I would fill up your music player with lots of tunes...

          • Re: Chemo during transplant...
            Laila98 Registered Users
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            Hey Warrior! Thanks for the response, I am glad she is doing well. Is she still feeling after 19 months? Does she have any energy or like feeling up to anything..I guess that's a questin in my mind of how long it's gonna take to bounce back from everythign.. i know it's a long road and I'm not going to push myself past my limits.. i mean it if takes 2 or even 3 yrs then so be it at least I get the rest of my lfie back... But just an inquiring mind lol. i'm okay with homeschooling, probably what I'll end up doing which is fine. I had to move anyways so not like I'll be with my friends walking with caps and gowns so as long as I finish I'm ok. I'm not your typical teenager but yet I'm not your couch potato and I'm tired of sitting in bed lol, though when I'm super exhausted it's kind of nice not having to get up and go somewhere!

            • Re: Chemo during transplant...
              warrior Registered Users
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              Hi Laila

              Kathy is doing very well at 19 months out... She still has some fatigue but it has gotten so much better.....

              I think everyone recovers from the preparation for the SCT and the transplant at different rates, depending on how boring everything goes. In this business boring is what you wish for!  After the chemo/and or radiation your body is going to have to recover from that and then it going to have to build up a new bone marrow, blood lines and a new immune system..... Kathy had an auto sct and was back at work +6 months.. My advice is to try and keep walking through the entire process; follow all the instructions  that the nurses and docs give you.... you also might stock pile funny movies. When KAthy was recovering from her sct we watched a bit of a funny movie every night before she went to bed. only funny movies and old funny tv shows...I also kept a caring bridge site for Kathy and 2 years from her diagnosis she has had 13,172 visits....I love your joke a day.... I also took a picture of kathy every day. It has been a nice way to chronicle her journey through this tough land  known as leukemia....It is a long marathon but you are young and determined keep us posted and keep asking questions and remember you have a cheering squad out here in cyber space.... now you have to imagine Tex and me in our cheer leading outfits

  • Chemo during transplant...
    Laila98 Registered Users
    Currently Being Moderated

    Okay so as long as it's not like green I'll know what it is lol. I like to know what I'm coming up against, i try to prepare myself mentally, I doubt i'll ever really be mentally ready but hey it's worth a short :-D lol. Hey guy the way I have a save the date for you guys... 3/12/12... I'm not getting married lol but it's my save the date inventations for the begining of my transplant lol. Fingers, toes, eyes and whatever else you can cross that it goes well!! They said I can't know who my donor is until 2 years after the transplant date then they give both of us each others information. Obviously I want to say thank you to the person who saved my life but I understand why they have to wait....

    Oh I found out today also that you normally go sterile during transplant... Luckily I don't want kids in the future but that'd be a real bummer if I did... I figure 1 i never wanted kids anyways cause I don't wanna screw up like my parents did and 2. if I decided I ever want to have a baby there a pleanty out there that need good homes to go to.. So we'll cross that bridge in like 20 years lol... Yeah at least a min of 20 years..

    Thanks for chatting with me you guys!!!! I'm exhausted, I feel constantly tired stinks... gonna nap

    • Re: Chemo during transplant...
      Tex Registered Users
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      I think in the next few days you'll feel ready for it.  Most of us get anxious to go ahead and get on with it at a certain point.  I'm predicting about a week from today for you.  If I'm wrong, I'm wrong, but at least I took a shot.

       

      I don't know that sterilization is necessarily "normal" but it does happen quite often.  I know at 15-16 you think you can anticipate how you're going to feel about things but minds change.  You might want to bank some of your eggs just in case you change your mind as you get older.

       

      At your age I didn't want kids, then I got married, had stepsons and decided I really didn't want kids.  At 57, I think I made the right decision for me and any kids I might've had.  Still, there is a sense I've missed out on one of life's great adventures and there was a while where I really, really wanted some.

       

      All I'm suggesting is that you take some time to prepare for any alternative.  You'll be amazed at how many things you'll change your mind about as you get older.  Really freaking amazed.  I'm still changing my mind about things.

    • Re: Chemo during transplant...
      tranier Registered Users
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      L-

       

      Please take this as a kindly thought...You may want children in the future-as amazing a young woman as you are...you would never make the unfortunate mistakes your parents did-I know cuz I've taught Kdg for 23 years, supporting many unsure moms who had horrific childhoods...and they are amazing!  I didn't want children either until I was in my late 20s!

      Also, not sure about the cost difference but we only pay 200 per year to keep BJs sperm frozen...It wouldn't hurt to talk to your aunt about it-at least it keeps your options open...but do it before the heavy stuff takes effect too much!  Again, just another opinion!

    • Re: Chemo during transplant...
      Kriso8 Registered Users
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      Hi Laila, I'm actually currently finishing up my last day of chemo today and receiving the stem cells infusion on Wed. March 7. I hope it works best for both of us! Good luck and God Bless!

  • Chemo during transplant...
    Laila98 Registered Users
    Currently Being Moderated

    I guess I could look into it.. I've never wanted kids but I guess you're right Tex we do change our mind often in life. I mean heck when I was 6 I wanted to be a mermaid and I thought if I sat in the water long enough and when my skin was getting wrinkly I was so close to becoming one... I was a weird child I know lol. I guess I'll look into it so I don't hate myself later in life, but only cause ya'll are saying I might lol.. I've never wanted kids, but like ya'll said I don't know what I'd want in 20 yrs when I'm 35 so i'll look into it... thankq

    • Re: Chemo during transplant...
      Tex Registered Users
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      Getting older is weird.  I remember I wasn't going to go to my high school graduation.  My sister said someday I might wish I've gone.  Well, it still remains a wasted three hours of my life.  None of my friends went, I couldn't find them after the ceremony and I spent graduation night driving around Dallas trying to find them.

       

      Still, I'm nor glad I went only because I know it sucked and I'll never have to wonder if I missed something special.  I did skip my college graduation and never regretted it.  I made it for my master's graduation and it sucked, but I had made close friends, so I'm glad I went.

       

      All I'm saying is you never know.  Lots of things I've gone ahead and done that I never thought I'd do that I'm glad I went on ahead and did.  I'm glad my wife had already had kids so there was no pressure on me to spawn the little satans I probably would've.

    • Re: Chemo during transplant...
      susantheresa Registered Users
      Currently Being Moderated

      Hi Laila,

      So much going on I'll bet your head is spinning. Today Iam shakey.  Somehow I managed to drink about 2 pots of coffee. I just noticed it as I started typing.  anyhow, Many years ago my friend was getting ready to have chemo, she was in her twenties.  i guess the doctors discussed with her and her Family about freezing some of her eggs.  She did and now in her late forties she has this really great daughter, and cancer free.you just never know and as everyone says here we are constanly evolving and our minds change all of the time.  What was once imortant to me, now seems trivial.I was never blessed with children but I do have nieces an nephews and I 've been involved in relationships over my 55 year life span that heavivly involved children.  I acted like a step mom but those relationships just didnt work.  My personal decision not to have children hit me when I ws getting prepared for my transplant. Boom. That was it. Next stop for me.MENAPOUS, YIPPEE.. Anyhow, everything always works out and as I said, we are always evolving.  You have a lot of food on your plateand trust me  I know you will be o.k. because you are asking all of the right questions.  Blessings, SusanM

  • Chemo during transplant...
    Laila98 Registered Users
    Currently Being Moderated

    I have a question... If i were to freeze my eggs because let's say I go sterile, does that mean I'd have to get someone else to have the babies for me later in life? Or could I put those eggs back in me even though I "can't have kids anymore" ... Does that question make sense? lol

    • Re: Chemo during transplant...
      porciniak Registered Users
      Currently Being Moderated

      Hello Laila

       

      Good question, and one to ask your onc; however, chances are you'd be able to carry a child.  That would depend upon many hormonal issues, so, it's really a doc question.

       

      And, to add my 3 cents.

       

      1. I've lost my hair several times from chemo and it never came back in grey, it was more similar to 'youngster' hair.  So if you were a towhead it might come back in like that.

       

      2. Storing eggs:  good idea AND ck with onc.  I heard that there may be drugs now that can protect ovaries; but, as it was never an issue for me I did not investigate it further.

       

      3.  Your writing is wonderful, gifted I'd say. 

       

      4.  Carringbridge is a great place and on those days when you don't feel like updating your followers, like us, your Aunty or Uncle could do it for you.

       

      Keep up the good work, question, seek answers, examine your feelings.

       

      Oh, one more thing, kinda corney but GI Jane is a great movie whose lead is a woman with a shaved head, lol. 

       

      3/12  we'll put it on our calendar!  <<hugs>> dj

      • Re: Chemo during transplant...
        Tex Registered Users
        Currently Being Moderated

        porciniak wrote:

         

        1. I've lost my hair several times from chemo and it never came back in grey, it was more similar to 'youngster' hair.  So if you were a towhead it might come back in like that.

         

        But when me met I thought our hair was...

         

        Oops!  Caught myself just in time!  (Note to self:  NEVER say that to a woman.)

        • Re: Chemo during transplant...
          porciniak Registered Users
          Currently Being Moderated

          Really?  I stand corrected; however, it doesn't count, 'cause that would be NATURAL grey, not some chemo induced aberrant grey, lol

           

          My hair has always been 'mousy' brown and the grey is hard for me to see

    • Re: Chemo during transplant...
      susantheresa Registered Users
      Currently Being Moderated

      Hi Laila,

       

      My girlfriend had her eggs frozen and when she met the man who became her husband, her eggs were hers, and fertilized by her husband in a petrie dish and then implanted back into her utereus for their pregnancy. She carried that little girl full term an that child is now i think 27/. You will meet the right man and love conquers all.  All will work out.

      By the way after my post around 5 this evening I was in the kitchen finishing up my dinner.  I took two porkchops out of the oven put some applesauce in a dish, went to the cupboard and I have this cinnamon/sugarmccormicks grinder.  I pulled it out of the cupboard and sprinkled black pepper all over my applesauce. Now I thought I had all of my wits about me.  Guess I don't.  thought you would get a kick out of that.  thank god I had more applesauce.  Susan M

  • Re: Chemo during transplant...
    Kriso8 Registered Users
    Currently Being Moderated

    just a lil funny....

    "You know what they say about them stem cells.... here today, gone to marrow!!!

  • Chemo during transplant...
    Laila98 Registered Users
    Currently Being Moderated

    Kris we will def go through this together, good luck hun!!!! How was the chemo. was it bad?  :-/ and good joke that was actually really cute lol! I am putting a joke of the day on my carebridge site as a joke to try an make me smile after I vent for the day lol.... I'll have to remember that one ;-).. Have you heard the one aboutt he toilet??? ahhh nevermind it's too dirty ;-)...

     

    Bless you to a speedy revocery!!! Will be thinking about you : )

     

  • Chemo during transplant...
    Laila98 Registered Users
    Currently Being Moderated

    I do have one question though... What the heck is a towhead???

    • Re: Chemo during transplant...
      porciniak Registered Users
      Currently Being Moderated

      lol, oh my, I am showing my age

       

      Towhead is what they used to call those toddlers, children, with very light/white blond hair!

      • Re: Chemo during transplant...
        Tex Registered Users
        Currently Being Moderated

        Hey, maybe it was blonde.  I just remember there was some lighter color to your brownishness.  And I have chemo brain.  Who knows?

         

        Hey, can you believe it?  I was a towhead as a child.  And, yeah, we're dating ourselves but I'm happy to be here so, I don't care how old people think I am.

        • Re: Chemo during transplant...
          porciniak Registered Users
          Currently Being Moderated

          Tex wrote:

           

          ......  And I have chemo brain.  Who knows?

           

           

           

          Sorry, no back peddling or chemo brain card playing, lol..   My eyesight is sooo bad that it'd have to have PLENTY of grey for ME to see it, lol.    And I don't spend much time in front of a mirror  God's kind, he makes sure our eyes get bad when were 'older' so we don't see it all quite so clearly

    • Re: Chemo during transplant...
      Lottie Registered Users
      Currently Being Moderated

      Hi Laila,

      I was looking at your blog and in it you were asking if the day -5 or the day 0 was your new "birthday." It would be the day 0. Day -5 is the start of what they call "conditioning" AKA chemo. Day 0 you will get your new stem cells and they consider it a "rebirth."

      The whole day thing will start to make more sense to you as you get farther along; you're still so new to the game it can all be overwhelming.

      Most people leave the hospital between days +14 and +21, or at least thats what they told us. Nate came home on day +17. The first 100 days will be a big deal, too. You'll need to be extra careful about what you eat (because of bacteria), where you go, and how much you wash your hands. They will go over all of this with you and your aunt and uncle before you go home.

      When Nate was recovering I kept track of the "days" until right about then, day 100, and then just moved onto how many months out he was.

      Wishing you luck and a speedy rocovery! You've found a wonderful "family" here at the LLS, so please let us be part of your journey and feel comfortable talking about any topic and asking any questions

      -Lottie

  • Chemo during transplant...
    Laila98 Registered Users
    Currently Being Moderated

    No it's okay hun you arn't showing your age at all.. Thanks for explaining it to me though lol.

  • Chemo during transplant...
    Laila98 Registered Users
    Currently Being Moderated

    Great mental image lol thank goodness I don't know what ya'll look like lol.. It's bad enough everytime I watch looney toones, yes I watch them in the morning lol, I see Yosimetee Sam and think of Tex lol. Thanks for the insight.. What is auto? I'm having an Allo, does Auto mean your own cells? I'm assuming so huh lol. yeah i'm sure everyones recovery time will be different, my doctor said he's never seen anyone return to work or school before the 2 year mark with what I'm having and what he's seen?? I don't know know about all that just what he told me, maybe he's telling me longer to make me feel like a kickass (sorry for cursing) cancer patient when I am better sooner or if auto and allo are that much different.. I guess it doesn't really matter, i've become kinda knumb to it all now like I'm not scared about the transplant (at least right now lol) I was petrified and now I mean I've done everything I could to mentally prepare myself for this so like I'm like let's get it started and get it over with.. I think the hardest emotional part I will experience is my hair, they talked to me today about shaving it before I start and it make me tear up.. I know it's just hair and I'm being so foolish about it but it's like it's my hair! i'm trying to not let it stress me out cause I mean come on it's fricken hair it grows back it's not like i'm loosing a limb or half my skull.... I am thankful that I'm in good hands and it's something that will come back but at the same time I just can't help but think it's my hhhaaaiiirrrrr :'-(...  okay not going to let it get me down screw it it's hair... it's only hair, it's only hair.. that's what I'm going to keep telling myself everyday all day... it's only hair... It could be a lot worst...

    • Re: Chemo during transplant...
      Tex Registered Users
      Currently Being Moderated

      Laila wrote:

       

      I guess it doesn't really matter, i've become kinda knumb to it all now like I'm not scared about the transplant (at least right now lol) I was petrified and now I mean I've done everything I could to mentally prepare myself for this so like I'm like let's get it started and get it over with.



      Wow.  Just two days ago I said it would take a week for you to get to this point.  You obviously got ahead of the game.  I hope you don't go nuts in the next few days.

       

      Look. hair is important, especially to women.  I guess knowing we could always grow up and become bald makes men tend to look at hair with less possessiveness.  But it's also something that reminds you you're sick whenever you look in the mirror.  And when you're feeling good and have forgotten for a moment that you're sick, it really just shoves it right in your face.

       

      But you are also right that it will grow back.  I'm saying don't beat yourself up when you feel upset about it but, also, don't let it preoccupy you too much.  Perhaps it will be help to look at the stubble when it starts growing back as a visual reminder that a healthy you is growing back, too.

       

      Blessings

    • Re: Chemo during transplant...
      porciniak Registered Users
      Currently Being Moderated

      Laila,

       

      Being upset about losing your hair is NOT silly, you're entitled.  You'll adjust, but it is a big deal for a woman.  Hair's important, how we look is important.  Has any one mentioned the beauty classes that are provided?

       

      It was Spring time when I lost my hair for the first time too!

       

      I didn't shave, but when it started coming out in big clumps, it was time to do something about it; Soooo, I planned a bird nesting party with my 11 yo daughter, and had an  fun time.  It's so weird that one can pull out one's hair and feel no pain, which made it weird and interesting.  We sat in a breezy spot and threw what we pulled into the wind and talked about the critters that would find it & use it for a nest, the squirrels, the marmots, the hummingbirds, the eagles, crows & ravens.  It didn't seem like such a waste that way   Then my husband shaved what was left.

       

      Oh Tex, yes, I can imagine you as a towheaded youngster! 

    • Re: Chemo during transplant...
      susantheresa Registered Users
      Currently Being Moderated

      Hi Laila,

      It's me Susan m,

      Just wanted to tell you that I was supposed to be transplanted in November.  I kept looking for excused to postpone. Thanksgiving, Christmas, New Years, it was Winter, it was too cold, how would I be able to go outside after and walk around.  Deep inside I was really petrified.  finally my Dr. said thats it, we have to go.  Alright and then I went. April 27, 2005. I never told anyone that I was afraid and I can clearly remember all of the things that took place leading up to my admission.  I look back now and they wereo.k. times. I then started thinking about all of the great things that I had to look forward to.  Do things differently, learn new things, meet new people.  Good things come out of not so good situations. Promise.

      I toowas a towhead.  Never wore a wig I bought myself.  I looked better in scarfs. Donated my wig to a Breast Cancer foundation in my Moms name.  She died from breast cancer in 1995.  You will be so good. God will hold you in his hands. Susan

    • Re: Chemo during transplant...
      Lottie Registered Users
      Currently Being Moderated

      Laila wrote:

       

        I know it's just hair and I'm being so foolish about it but it's like it's my hair!

       

      Laila, it certainly is not foolish. Like Tex said, it is less traumatic I think for men. Nate, especially, because he was balding to begin with. But it is a very real reminder of the illness. I remember it made me sad at first, when Nate first lost his hair. It was like "wow, this is real." I think it's more difficult for women, especially someone your age. So don't feel silly or vain or anything. It's all perfectly natural to have those feelings.

      • Re: Chemo during transplant...
        Tex Registered Users
        Currently Being Moderated

        Lottie wrote:

         

        Like Tex said, it is less traumatic I think for men. Nate, especially, because he was balding to begin with

         

        One of the ironies about my dx is that I'd just started toying with the idea of shaving my head, just to see what it was like.  Back in '03, it was all the rage for us middle-aged types.

         

        My wife was against the idea so I'd kind of put it on the back burner but the curiosity and temptation was still there.  So, I was actually kind of excited to know I was going to lose my hair.

         

        It's interesting the thoughts that go through our minds in these situations and the things we can find positive about the experience.

         

        Or maybe I'm just nuts.  (Leave it alone, Kelly)

    • Re: Chemo during transplant...
      mamawarrior Registered Users
      Currently Being Moderated

      Hi laila,

      Just wanted to wish you well on your upcoming transplant. My son was 18 when diagnosed with aml, 20 when relapsed and had a double umbilical cord stem cell transplant. He was treated in pediatrics and a pediatric transplant center and had total body irradiation as part of his pretransplant conditioning should you have that. It is a difficult road but he has finished college since, has an apartment and a girlfriend, and enjoys life. I hope and expect the same for you. Will have my fingers crossed and a word with the Man upstairs.

  • Chemo during transplant...
    Laila98 Registered Users
    Currently Being Moderated

    ""One of the ironies about my dx is that I'd just started toying with the idea of shaving my head, just to see what it was like.  Back in '03, it was all the rage for us middle-aged types. ""

     

    Yeah those kindergarteners all were shaving their heads too lol...I was 6 in 03 haha... thanks for the compassion though Lottie I think men do think differently.. sooo I looked into the egg thing and I'M GOING TO GO INTO CHEMICAL INDUCED MENAPAUS??????? Are you kidding me! I just got my period two months ago and now I'm going to be an old women in menapaus :'( I'm having a horrible horrible day.... seriously i think my granny is in menapaus!!!!! I probably looked like a girl who got to much botox when the doctor told me that my eyebrows just raised and froze eye wide open for prob like 10 mins then tears just started flowing... I'm 15 going on 55 my spirit just floated away in the wind... I'm like in numbville now I don't know what to think, excet SCREW CANCER and SCREW LEUKEMIA!

    • Re: Chemo during transplant...
      porciniak Registered Users
      Currently Being Moderated

      <<hugs>>,

       

      Such a blow for you.  I've no clue what it's like, but I do know that you will still be you,  

       

      I also know that most transplant facilities do have therapist to talk about these earth shattering issues.  Don't know where you are being treated, but ck this out.  Lots of warm hugs are important too.

       

      It's usually very easy to get a psychologist or a phych social worker appointment if one is in an transplant program; noticed I didn't say psychiatrist, my prejudice    Many people shy away from sessions with such a specialist.  But, imho, when one has been run over by an auto, not going to the ER would be foolish.  So, if you feel emotionally 'run over', there are specialist that CAN HELP.

       

      Of course, hugs and love are the first treatment prescribed by dr. mushroom, lol.  Sorry, I was being pretty bossy, eh?

       

      <<hugs>>

    • Re: Chemo during transplant...
      Lottie Registered Users
      Currently Being Moderated

      Hi Laila,

      That is one of the crummy parts. But, a look on the bright side, no more periods! I know I hate mine. But, it is something that is mentally crushing. I second the thought of talking to psych. They can help you sort through all the emotions you are having right now. There is just so much to take it.

      My husband has been left sterile, which was really hard on him. Bring a young man, only 24 when he had his SCT, it was tough. He did sperm banking (and I highly reccommend egg banking for you), but it just isnt the same.

      I know that I cant even imagine what you are feeling right now. I am amazed at how well you are handling it and how mature you are about the process. When I was your age I dont know if I would have been able to take it all on like you are.

      Talk to your aunt and the nurses and psych, and even other kids your age there about it. Get all your emotions out there into the open. Cry when you need to cry, yell when you need to yell. It's okay to be angry and it's okay to be sad. Just know that by doing this transplant, you are choosing life. You are choosing to live. Life wont be exactly what you thought it would be, but you are choosing to have a future. Your life and your future are so important, and it is worth the side effects. I have a feeling that you have a LOT to offer to this world.

    • Re: Chemo during transplant...
      warrior Registered Users
      Currently Being Moderated

      Hi Laila,

       

      Just so you know we all think cancer and leukemia in particular "suck" .....I wish there was no need for this discussion board.....you are way too young to have to deal with all this really hard stuff....but sometimes humans just find them selves in really challenging situations....but you are a spunky young woman I can tell that  life has many adventures in store for you... you just have to slay the dragon called leukemia .... I would find your self in the hospital a medical psychologist.... you can yell  scream and cry all you want with them and they can help you navigate all the emotions....

      you have every right to be angry and sad at the loss of care free teen years when you only have to worry about passing the next exam in school and wearing the coolest out fit .....Kathy started seeing a psychologist when she was "in patient" and continued seeing her as an out patient for a year and a half. It was very helpful..... In terms of your hair loss you can take on the challenge of getting the coolest scarf.... and making the scarf a fashion statement. KAthy got a wig ( insurance paid for part of it) because she hated seeing herself in the mirror with no hair, it reminded her that she was sick...her hair is growing like gang busters these days and is in need on another trip to the hair stylist.

      stay determined and remember it is ok to cry.....

    • Re: Chemo during transplant...
      Sunshine48 Registered Users
      Currently Being Moderated

      Hi Miss Laila!!! So I swear UofM has us on the same schedule! I was at the fertility doctor today over at briarwood satelight office.. I too heard about the chemical induces menapaus and hunny I just turned 26 and I'm freaking out, i can't even imagin how you are feeling at 15.. I know you say you don't want to be a mom and hunny maybe you're right maybe you never will want kids but at least this way you'll have options in the future. I know I always wanted kids and still do so to me it's a no brainer lol but just know you have so much life to live and this will be even more life and options : ). If you never use them then that's okay too. I have no inspiring words about the menapaus cause I'm taking it hard myself but just know we'll be ok and we can go through menapaus together ;-).. I'll let you know when I'm in the hospital and what room number I am we can call each other and cry together if need be! thinking of you sweetie and we'll beat this together, where are ya'll staying after your transplant??? My Aunt lives in Ann arbor and has been on the ball with getting me lodging for the 100 days cause I live to far away. If you guys need help outside the social worker shoot me an email again and I'll have my aunt contact your aunt  or vice versa. my aunt is a professional talker haha she can bargin her way into anything and she has a lot of contacts to help out... Thinking of you hun!

    • Re: Chemo during transplant...
      Tex Registered Users
      Currently Being Moderated

      You are 15 going on 16.  Yes, it would suck to have your reproduction issues decided for you so young.  But that's only part of your life, kiddo.  There is so much more to it than having kids and, who knows, you might've been sterile anyway.  I had surgery at 21 that probably decided the issue for me (never really wanted kids so never had myself checked out but the surgery probably ruined it anyway).  I think I've lived a pretty normal life otherwise. 

       

      I hope you're coming out of your fog by now.  Yeah, that's tough to hear, but you're going to kick this thing's butt and live a full life.  So, get your game face on and do what you have to.

       

      Blessings

    • Re: Chemo during transplant...
      Lottie Registered Users
      Currently Being Moderated

      Hi laila,

      I know tomorrow is the big day when the conditioning starts, so I just want you to know you'll be in my thoughts tonight and tomorrow and basically until you get through it (and I know you can). Get rest, take care of yourself, and kick cancers butt.

  • Re: Chemo during transplant...
    susantheresa Registered Users
    Currently Being Moderated

    Hi Laila,

    I was just wondering if there is a transplant coordinator at your hospital.  I was required to see mine prior to my transplant. she stayed with me all through the process, cme onto the transplant ward and visited me and even went with me after I was discharged to the cancer centers wig shop and helpled me pick out a wig.  They have enough letters after thier names, not as much as a Doctor,, but pretty close.  ONC MSW BSRN oncology master in social work bachelor of science registerd nurse.Without that Woman, I would have been toast. People like that are the ones who help us and sometimes become lifelong friends.  yeas later I will call her and pick her brain.  I always make it a pont to see her when I go in for follow ups.when you come home, also look into a Gildas club in your community.  I did and have made some wonderful lifelong frienships.  I wonder how I got along all of these years without them. there are so many blessings that will come ou of this for you.  They did for me.  I cant tell you when or how but they will.  You will meet someday a wonderful man and your lopes and dreams willsurpass all that you even hoped for yourself.  i think and pray for you often. Susan M

  • Re: Chemo during transplant...
    Tex Registered Users
    Currently Being Moderated

    I know this is a time where I didn't even want to look at my computer and didn't.  Still, we haven't heard from you in over a week and I wanted to check in with you.  I hope things are going well.

     

    Let us hear from you when you feel up to it.

     

    Blessings

    • Re: Chemo during transplant...
      Sunshine48 Registered Users
      Currently Being Moderated

      Just so everyone knows about Laila, she has a caring bridge page.  She has updated twice but her aunt updates it as well. From what Laila has wrote she's had a hard week going through conditioning... but she's staying strong.

       

      Message was edited by:abena

      • Re: Chemo during transplant...
        Tex Registered Users
        Currently Being Moderated

        Thanks for the update.  I don't follow caringbridge pages because I would want to read everyone's and I have to get up from the computer and live life from time to time.

         

        I really appreciate you letting us know what you'd learned.  I hope she starts feeling better soon.

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