Starting Chemo June 2013!?!?!

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  • Netter
    Netter Member Posts: 107
    edited June 2013

    Okay for those of you that are ready, (which I am), this is a scarf tying web site. http://www.insideoutstyleblog.com/2011/03/how-to-tie-head-scarves.html  In the last video, several other unique methods come up.  I am also going to use beads, pretty head bands, etc. for accents.

  • annika12
    annika12 Member Posts: 433
    edited June 2013

    Netter- oh my really did lol!!

    Gingergirl- there is a book written by a swedish breast cancer survivor who said cancer is like being pregnant, something is growing in you but instead of a baby you get a new view on life!!! I loved being pregnant so I dont see it but a new life I can see!!

    Hopefully I will still start on thursday but decided to change oncologist last week!!! Got all my stuff and ready to get the cancer out of my body!!!

  • KSil
    KSil Member Posts: 56
    edited June 2013

    I start chemo on Thursday and I am really nervous. I am dreading losing my hair, which should be the least of my worries. I have kept this from my two girls (ages 9 and 11) but will tell them when school gets out. I just don't want to scare them, and I don't want to lie to them either. I told them that mommy had an Angelina Jolie kind of surgery, even though that's a bit of a stretch, since she didn't have the cancer part....

  • OceanWarrior
    OceanWarrior Member Posts: 96
    edited June 2013

    Thanks for the link for scarf tying Netter.  That is something I need to learn how to do.  I love the idea of accenting with beads etc.  Too hard to practice with a full head of hair.  

    I am now, at day 13 just starting to lose strands of hair if I run my fingers through.  It's going to be buzz time soon or our house will be covered in my long hair which I don't think we need.  My best friend has offered to do it for me.  Maybe try to keep it for one more cycle which is on Thursday.  Will see.  

    Off to see Oncologist today at the infusion clinic then blood work tomorrow.

    Hope everyone is doing well.

  • ckmoss
    ckmoss Member Posts: 613
    edited June 2013

    Netter-thanks for link..I am not ready yet..but as I am going to shave head a couple of days before 1st chemo..coming up fast.  I have bookmarked it..I have never tied a scarf on my head in my life...lol

  • dlm425
    dlm425 Member Posts: 209
    edited June 2013

    Day 5 and I still feel very tired and nauseated when does this feeling go away. Yuck I want to eat all day long though which is weird. Cant seen to kick this foggy feeling either cant focus gingerale is burning as it goes down. When do thenmouth sores start.

  • Alibeths
    Alibeths Member Posts: 656
    edited June 2013

    i think the tired is here for a while!  It's ANNOYING...Like pregnancy!!!   I am eating a lot as well...All that I am on is Prilocec 2x a day and Claritin.  AND a pain pill for my port~  : ((((

    To me, the port has been the worst.  And the FOGGY feeling 3 days after infusion.  I def. am realy tired, but I am ok with this now...After reading some of this crazy stuff, I though I would be camped out on my toilet!!!!   I just want to click my heels and be done!!!!!!   

    *Anyone else having issues/pain with the port?????Cool

  • ckmoss
    ckmoss Member Posts: 613
    edited June 2013

    Aibeths- Lord yes!! They put mine in last Weds..was told by EVERYONE that was nothing to it..gonna be a bit sore...mine hurt so bad when I was in recovery ..I was crying (this will all those narcotics in me)..I even asked was the surgery done right..as no one at any time said it would be like this...mine didn't stop hurting...well I guess until today ..to where I don't have to have narcotic..The only thing in my life that has come close to that pain was kidneystones...and I think they are tied. I kept feeling too sharp knife pain where line runs to artery/heart??..  When did you get yours put in?

  • Alibeths
    Alibeths Member Posts: 656
    edited June 2013

    A week ago today..its not so much the actual "port", it feels like its constricting something?!  And my neck... UGH!  Also, hurts to laugh!!!  SO weird.....I went to the radiologist and he checked it out and said it was healing great!!!  Alo, peeked at the veins with an ultrasound.  I dont know what else to do!!

  • ckmoss
    ckmoss Member Posts: 613
    edited June 2013

    Where did they put it? Mine was on my chest..but another lady from my surgery board is having a AWFUL time..as they had to put either up on her a neck a bit or at the base..not sure which..but she has barely been posting and has to take vicadin..she had hers done Friday and still hurting bad.  When I lie on my side (MX side) and if my arm is lying forward on the bed..I think it pushes on it or something and I can feel that tube....so is that what feels like constricting?

  • Alibeths
    Alibeths Member Posts: 656
    edited June 2013

    I think so!!  It hurts when i LAUGH also!

  • ckmoss
    ckmoss Member Posts: 613
    edited June 2013

    What are you taking for it? If they have said looks fine, maybe its going to take a little bit..When I complained to the surgeon nurse that port-O-Hell has been worse than MX, lump..had veins collapse..and have post op infection PLUS serona at MX site going on at same time of port pain..she said that everyones pain threshold is different and she said she thinks mine was just full to where things are bothering me more (she said this all in medical jargon..this is what I took from it)...my surgeon had me on LORTABS..(I get those if I have tooth pulled for goodness sakes!)..so he gave me prilocec..its helped but honestly it took 4 days before they helped with pain..other than just take off the edge of the pain..Everyone Ive seen now that has a hard time is on vicodin. I get real stupid (memory,etc) on pills..so I take just as long as I have to and thats it.

  • annika12
    annika12 Member Posts: 433
    edited June 2013

    It took a week for my port pain to go away!! Today day 8 I feel good!! The only thing is I can feel it my neck and it makes me cough!!! Going fir surgery check up today

  • Tasharka
    Tasharka Member Posts: 16
    edited June 2013

    OK I'm on day 4 and have done pretty good so far. The only thing I have

    experienced is neck and shoulder pain and begin tired.

    I have an appointment with onc this Friday for blood work and I'm very nervous because it was horrible accessing my port the first time. Did anyone have problems with port being accessed?



    Also very down about impending hair loss. Made an appt this Saturday to get my hair cut. I don't think I can shave it off so I'm going to just cut it as short as I can without freaking out. :(



    Hope everyone is having a good day today.





  • ckmoss
    ckmoss Member Posts: 613
    edited June 2013

    Tasharka-I'm glad you are doing good so far.  

    Ref to your hair-have you went and picked out a wig yet? I've had mine for a month..and its really close to my own hair in color and length..but with kick butt highlights and cut..Im still having hard time picking up to phone to make actual appt..but, it helps if you have replacement ready..or some real cute hats/scarf..my fear is eyebrows/lashes..

  • VAL1966
    VAL1966 Member Posts: 37
    edited June 2013

    Same here Rain... 13 days and no unusual shedding... I say watch out next round😁 it's gonna hit us hard !!!!

  • VAL1966
    VAL1966 Member Posts: 37
    edited June 2013

    dim... It took 5 full days for my nausea and about 8 days for the fatigue for me! I did not want to eat though... And my mouth started to get raw after 8 days and only got one tiny little mouth sore... But did rinse my mouth lots with baking soda, salt and warm water !! Hope you feel better soon ... Hugs

  • Tasharka
    Tasharka Member Posts: 16
    edited June 2013

    ckmoss- I did order a wig that was close to my color and style also.

    I haven't even thought about eye lashes and brows...

  • maureenb
    maureenb Member Posts: 81
    edited June 2013

    Alibeths-  my port is really bothering me too.  Almost more than the other stuff.  It is so close to my skin that when they first put it in, you could actually see the color of one of the knobs.  It feels sore and like it's burning and I can't stand to have anything touch it.  Seatbets and bras are awful.  

    It feels really weird when I bend over like to pick something up off the ground--  feels like someone is squeezing my neck.  I guess that's swelling from where the tube is?

    Today the one knob that was most visible has a tiny scab on top of it.  Hope that doesn't mean it's going to come popping out of my chest.  

    The day after they put it in, I went back to the hospital and the surgeon who put it in came and looked at it.  He said it looked fine.  My onc also said it looked fine, normal.  So far that's what everyone has said.  I guess it just takes a really long time for it to feel normal for some people.  It would have helped if they told you this thing was a big deal but everyone acts like it's just an afterthought-  a simple thing to help with chemo.  

    I wonder-  if I have 6 chemo treatments-  is my overall pain and uncomfort more or less with a port.  Hmm.  6 days of discomfort and possible trouble finding a vein versus I am on day 8 from port placement now and have constant discomfort and who knows when it will feel better.  

  • Netter
    Netter Member Posts: 107
    edited June 2013

    When I got my lab work today, the nurse told me that the port has a lifetime warranty and not to let anyone take it out.  I have awful veins and will probably leave mine in. I have zero pain with mine.  When my hubby gets home tonight I am going to have him get rid of all of my hair.  It is falling out everywhere!  What a mess!  I have been using Brian Joseph on my brows and eyelashes................so far so good.

  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited June 2013

    I can tell from the posts that the hair days for some is rapidly approaching.  Just remember no matter what you elect to do about your hair, there are not set rules, no limitations, no right way or wrong way to deal with the hair.  It is a very personal decision as to what to do, when to cut, how much to cut ,etc.  I know it's not easy to be at this point because it will be the most obvious indication to the world that you may be having chemo and also an eye opener when you look in the mirror.  For me, I cut it to a very very short boy haircut and let whatever happen, happen.  I didn't shave/buzz my head because I knew I couldn't handle seeing myself like that after having waist length hair.  I used a lint roller to get the hair off of me, my clothes, my bed pillow, etc.  It was in the shower that I had that moment when I saw the hair in the drain and said I have a choice here--- I can lose it or say out loud--- the hair is going and I need to clean this drain.  I chose the later of the two and made an effort not to fixate on looking at myself in the mirror.  No matter what, you are each beautiful and very special.

  • Netter
    Netter Member Posts: 107
    edited June 2013

    My port doesn't have anything that pokes out!!!  It is smooth.  It was probably sore for around 10 days but nothing like what you are talking about.

  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited June 2013

    Ladies- Make sure you check to see if there is an American Cancer Society Look Good Feel Good program in your area.  They will fit you for a free wig and also have a make up session where you will receive a free make up bag.  They also have instructions on line for tying scarves.  There is no cost for attending their programs.

    As for head coverings, I wore baseball caps, straw hats (Target), bandanas, and Buffs.  When at home, I didn't wear anything on my head.  I had a wig but never wore it.  I think it has abandonment issues since I never took it out of the plastic bag that I received it in.  Each of you will find your own style and comfort zone with the head coverings/ or no head coverings. 

  • Tasharka
    Tasharka Member Posts: 16
    edited June 2013

    Melrosemelrose- I just signed up for the look good feel better program. I didn't know they would provide a wig also.



    Netter- Is Brian Johnson a make up brand?



    By the way I am so very happy I have all of you to share with and get advice on everything. This is very hard and it really helps to hear from you all!!!

  • ckmoss
    ckmoss Member Posts: 613
    edited June 2013

    Tasharka-I am sorry to be the one who made you think of eyebrows/lashes..When I found out I was going to have to have chemo I knew I would lose my hair..that was about the only thing I knew about chemo..that and you throw up..When I read about lashes/brows...I was like WHATTTTTT?..Im praying mine doesnt fall out..I there is a website that sells those products?  There was a website address listed somewhere in this website I saw and went on..but seem pricey. I have bills coming in like crazy from my first surgery..not even the other two yet..and on 65% pay..so will have to use the power of prayer.

  • Netter
    Netter Member Posts: 107
    edited June 2013

    This is the Brian Joseph web site.  The inventor's wife got breast cancer and he made this up for his wife.  It is pricey, but I have been using it for almost a month and hardly used any at all.  http://brianjosephs.com/cgi-bin/Agora/agora.cgi?cart_id=&product=PersonalCare

  • TeeDills2013
    TeeDills2013 Member Posts: 11
    edited June 2013

    Tasharka - I just saw your post about the neck and shoulder pain - I had the same issue and my MO said it was definately the neulasta - he decreased my dose the second time and had just a twinge of pain - BIG DIFFERENCE - he also said to use ibuprofen if I needed to.

  • Laura5133388
    Laura5133388 Member Posts: 577
    edited June 2013

    Someone posted about trying cold caps but had already started treatment. I am afraid that it is too late....although they would help your hair start growing back right away.

  • rachel22
    rachel22 Member Posts: 54
    edited June 2013

    Regarding port pain, I had pretty severe pain for about a week. Took a total of two weeks before the pain was totally gone. Now it's fine, so I'm hoping all you ladies experiencing pain will get relief soon.



    Day 2 post-chemo and I'm tired and groggy but had a few bursts of energy. Good luck to anyone starting this week!



    All of the wonderful advice and tips are so helpful...thanks to everyone for sharing!

  • ckmoss
    ckmoss Member Posts: 613
    edited June 2013

    I'm curious. Everyone had told me that you don't feel your first time at all.  That it built up and the 3rd time was when you started feeling side effects, but it seems a lot of you are feeling effects from first time....of course, I was told that port was "nothing to it" and would be "just a little sore at first".

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