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March 2011 chemo-lounge

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Comments

  • Mauimama
    Mauimama Member Posts: 16

    jenn_h

    Thanks so much for the suggestion....couple of other ladies had great recommendations as well, so I'm going to stop at Target or local drug store today and get a little supply for my soon-to-be-bald noggen....couple of friends of mine who went through BC recently also echo'd the sentiment and said "if you can put it on your face, it should be fine to put on your scalp"....I appreciate the tip & put it on my things-to-get list!

    I'm half-way through 4 treatments -- 2 left to go but like all of us, I want to stay as physically comfortable (especially with no hair!) as possible without doing harm to my skin....

    Thank you again!!  This site is the BEST for fast and well-informed suggestions -- MUCH MORE so than any oncs because unless it's a rare situation, most oncs haven't experienced everything we're going through and there's nobody better to get guidance from than someone who's already been down the same path as you.  

    I'm off to my granddaughter's track meet ~ hope you're having an AWESOME Sunday!

    Aloha~

  • djls
    djls Member Posts: 21

    I have another chemo tip to be used with caution.  I thought my port incision was getting infected and it just didn't seem to be healing.  I started putting a heating pad on it for a few hours a day while I was watching tv or using my lap top....and the heat worked miracles.  I have used heat before for stubborn cuts that get infected, but never within the context of chemo.

    I think increasing the blood flow to the area allows more of my limited white blood cells to get to the area.  Just two days of doing that and it looks so much better and has suddenly started healing. 

    The reason I said use this tip with caution is because I think an infection can get to a point where heat isn't going to help and you need an antibiotic.  If your wbc is lower than mine, that might also affect how useful heat is. At any rate, is something to try! If it doesn't seem to be helping, don't mess around and call the doctor.

    I also finally picked my song of the week, compliments of church this morning.  It's "You Never Let Go" by Matt Redman.  Had a hard time not crying, as usual.

    Even though I walk through the valley of the shadow of death,
    Your perfect love is casting out fear
    And even when I'm caught in the middle of the storms of this life,
    I won't turn back, I know You are near

    And I will fear no evil
    For my God is with me
    And if my God is with me
    Whom then shall I fear?
    Whom then shall I fear?

    Oh no, You never let go
    Through the calm and through the storm
    Oh no, You never let go
    In every high and every low
    Oh no, You never let go
    Lord, You never let go of me

    And I can see a light that is coming for the heart that holds on,
    A glorious light beyond all compare
    And there will be an end to these troubles
    But until that day comes,
    We'll live to know You here on the earth

    Yes, I can see a light that is coming for the heart that holds on,
    And there will be an end to these troubles
    But until that day comes,
    Still I will praise You,
    still I will praise You

  • dizzyakira
    dizzyakira Member Posts: 41

    Hi ladies,

    Got my 2nd AC Friday and my hair started to shed Saturday morning. I ran to the barber shop on the corner in my PJs and got all kids of wierd stares lol. Infuriating thing is that there's no sign of hair shedding anywhere else but my head lol. SO I still have to shave armpits/legs every week and my fingers are starting to grow dark thick hair! Ugh. My 7 year old daughter says I look better now than with hair and my 2 year old son refuses to touch my head lol. But they are both having a lot of fun rolling lint rollers on my head.

    Ladies, you are right, the second round is better, a bit easier. I was able to walk, go shopping, run around and just be a bit tired. My bad days are 4.5.6 so I hope the effects are lessen also.

    I also have trouble tying those scarfs and at best look very "gangsta" and have been advised to stay away from certain colors since I live in Brookyn and they could be mistaken for gang signs. I'm rocking a black with pink roses one so I hope it hasn't been claimed yet.

    Lily: your posts always bring a smile to my face :)

    Jules: I hope you get relief soon, it sucks to be uncomfortable

    Kym: Ugh, still snow?? I'm sending Spring vibes to you. It's 58 F in Brooklyn today and people are in short sleeves (insane to me who still wear a coat until the 70s lol)

    I hope everyone is well and happy this weekend:) Can you believe chemo #2 is done already???? Or coming up for some of you ladies??? We are on our way to be done :)

    Take care

    kim

  • Kymn
    Kymn Member Posts: 887

    Hey dizzy i know its crazy isnt it number 2 right around the corner for me just seems like yesterday I signed up on this site so friggin scared and clueless lol. I have always wanted to see New york, maybe one day and I can go to a rangers game :) I love hockey.

  • supersally
    supersally Member Posts: 158

    Hi ladies, lots to catch up with today.  Loving the music we have going in the lounge.  Dancing to these great tunes is no problem.  Didn't think of "Closer to Fine", love that song!  Good choice.

    Kymn - so sorry about the snow.  It is 85 and sunny, although windy today.  You probably don't want to hear that though.

    Maria - I'm going to check out "Eat, Pray, Love", haven't seen it yet but sounds good.  I hope you had fun with your family poker party last night.

    Huskerkkc - Mine is coming out 5-6 strands at a time.  I'm going to call my hair girl and get it buzzed on Tuesday.  She isn't open on Monday, so I'll pick up DD after school as she wants to go, and get it done.  I'm with you, I don't like all the hairs in the shower, etc.

    Dizzy - I have this one weird hair that grows on my chin, and that sucker still seems to be growing.  I plucked it, AGAIN, the day my hair started coming out.  Maybe it won't grow back?!? Hair on legs and armpits growing slow, so not sure if it will keep going or not.  Hair "down there" shedding about like hair on my head.  I'm actually ready for it to go so I can wear my cute hats, scarves, even my wigs.

    Lilylady - Can't wait to hear about the video.  Sounds like maybe something to put you to sleep.Can you take Ambien or something?  Ambien is helping me.

    I've had a little too much family time this weekend.  Spent Friday at home with DH and cable guy, then DD after school, ate dinner together with friends.  Yesterday, we all went and got pedicures together.  Then today, brunch with the in-laws then we all went to the barn.  Ready for them to go hit golf balls and give me some space!  My MIL was well behaved, she didn't say anything bad.  SIL got on my DH's nerves, but I was fine with her.  I may go take a nap now, a little tired.  Grouchy due to hair going also, right when I was getting in the groove of my new 'do.

    Songs, hmmm, can't think of one right now.  Will think on it and post in a bit...

  • Kymn
    Kymn Member Posts: 887

    I love the song Life by Our Lady Peace the video on U tube really hits close to home if you ladies havent seen I would suggest watching it so beautiful

    Life is waiting for you its all messed up but were alive

    Life is waiting for you its all messed up but we'll survive

  • Jules59
    Jules59 Member Posts: 148

    This is the third time I'm typing this, hope it doesn't disappear into cyberspace.  I want to thank each of you for your encouragment.  I did finally call my doctor back and leave a message.  The nurse on call got right back with me and said it did sound like I have folliculitis, an inflamation of the hair follicles.  She said it  is a common SE of chemo and happens after your hair falls out.  The remedy is dandruff shampoo like Head and Shoulders or Pert Plus followed by hydracortizone cream or benadril cream.  Sounds too simple to work, but my DH went to the drug store immediatly for the supplies and I've given it a try.  I'll let you all know if it works.

    I'll never again hesitate to call my doctor after hours.  Thanks again for pointing out how foolish I was being by failing to ask for help. This is truely a miserable SE, and I hope it's one all of you can bypass.

  • Kay_G
    Kay_G Member Posts: 1,914

    Jules,

    So glad you called.  Hope you feel better soon. 

  • charlottesmama
    charlottesmama Member Posts: 36

    Hi Gals! Glass of Pinot Noir for me, please. Can I just say that I think chemo HAS been primative for 20 years! Hard to believe we still ahve to go through it.

    Hair loss, etc.... Your head will ache and burn. That's the sign that it's gonna come out in big clumps. I've been rocking the semi-bald since, and am quite comfortable with it, but let me tell you I cried like a baby when that happened. You'll get over it and move on. I developed some spots on my head and used T-Sal shampoo. Cleared it up right away. Any other spots I treat with tea tree oil.

    Here are my musical choices, if you don't mind a little cancer-kicking ass-shaking dance sh*t: Green Day's "Know Your Enemy" (my ringtone of choice), Chumbawamba's "Tubthumping" (I get knocked down! But I get up again!) and Cake's "Going the Distance". Wish I could include the links, but apparently one can't paste ANYTHING into these threads.

    Off to rub some coconut oil on my scalp! 

  • PennyCookson
    PennyCookson Member Posts: 356

    Wore my wig for the first time yesterday (have used scarves up to now), at a party where there happened to be 5 bald guys.  Discarded the wig and I now have a photo of me bald with 5 bald men. (and also one of me bald and one of them in the wig)

    At least the wig is proving more fun than the scarves

  • BlueCowgirl
    BlueCowgirl Member Posts: 132

    My hair = going, going, gone! I discovered yesterday that there is definitely a certain length of time that a wig can be worn comfortably. Got a splitting headache and thought, there goes the day, but as soon as wig was off headache was instantly gone, thank goodness. I *LOVE* my buff hat/headcover thingy and highly recommend to anyone with itchy/sore/cold scalp!

    I definitely plan to rock the bald thing, it's just tooo cold yet, and right now it looks like I'm moulting. Ick. 

  • lilylady
    lilylady Member Posts: 478

    I got my free Gaila in the mail today-sooooo not me. I am like BlueCowgirl-the survivor style buff will probably be my headcover of choice. My knitting group sent me a big box of the cutest caps you have ever seen. All different designs and colors-but even though they are lightweight cotton they still look like winter caps to me-maye I should send 1 to Kym. So sorry to hear you are still locked in winter. I have approx 400 tulip bulbs ready to bust open any day. The daffodils have been blooming for a week. Lenten roses still looking good and---and I will stop there. Some things only a fellow gardener would want to hear about.

    Penny-hilarious about the bald guys at the party. That's a picture we would all love to see.

    Have done lots of liver research this weekend. Do you know your liver weighs 3lbs? Isn't that kind of gross? Pick up a 3lb package of hamburger next time you are at the market and picture it behind your ribs.

    Jules-I hope you got some relief from your follicle thing. And glad you learned your lesson about calling when you have a problem-I am sorry to say I have learned that YOU have to be your own advocate and the squeaky wheel gets the grease. Being polite gets you nowhere-and that is sad. If I have to roll out CRAZY CANCER BITCH-it's only because they have forced me there.

  • BlueCowgirl
    BlueCowgirl Member Posts: 132

    LilyLady, your posts always make me smile. I have played the CRAZY CANCER BITCH card a few times dealing with Rx, appointments, bills, etc. Sad but true, it DOES work. Jules, so glad you got relief and learned that hard lesson most of us have to deal with sooner or later. Here's hoping your head feels much better now.

  • Kymn
    Kymn Member Posts: 887

    good morning ladies,

    Yes lily lady I could certainly use the warm caps lol it isnt snowing today but still cold and miserable I am so jealous with all the flowers you are about to get, I cant even see my grass yet and there are no leaves on any trees its really quite depressing. I am finding some shedding now a bit, I used a lint roller on my head this am and defintetly had some shedding going on there..

    Yeah I had to use the crazy cancer bitch card too, I hate that why cant people just respect us and help us out without being so difficult. I wanted to get copies of all my reports and jeez what a production that was, Its my body for pete's sake dont I have a right to know exactly what is going on? Crazy

    Penny that is funny about the wig, they do bring some amusement I had a few wanting to wear mine on friday too lol.

    I think when it warms up, if it ever does, I will prolly rock the bald thing, we shall see when the time comes.

    Ok have to go and get some work done, have a great monday just one step closer to the weekend lol.

    hugs Kymn

  • MIchelle67
    MIchelle67 Member Posts: 42

    Hi fellow loungers, sorry I dropped off the planet for so long.

    I was last here right before my most recent (2nd) chemo on 3/24. I had reactions this time, to both the taxotere and cytoxan. It was a long day, I was there from 11am to 7pm. It's taken me a while to get back here, I'm going to need a day or so to catch up with you all.

    Like Maria, I'm also now halfway done. Two done, two to go. Trying not to be too scared to go back after the reactions. Also developed a chemical burn at my IV site on day 6 post-infusion. Weird. I have a red line where the needle was and it felt like a real burn. It's fading now, thankfully.

     Lililady: I am so sorry at your recent news but you do have the right attitude. I know the book you wrote about but there's another woman, an author, who's been living at IV for like 17 years. Her name is Katherine Russell Rich and I hope this link works:

    Http://www.oprah.com/health/Katherine-Ruseell-Rich-On-surviving-Stage-IV-Breast-Cancer

    If not, you can Google her, hers is an amazing story. In fact, she recently posted here on yet another anniversary. Please know you are in my thoughts.

    On hair: Like many of you have posted I am now sans locks. The day after tx 2 I finally convinced DH to buzz it off, it was falling everywhere (even tho' I had no bald patches yet) and itchy. So I now have a layer of fluffy fuzz all over. 

    Anyone else have a tiny bit of itchy rash on their head? I had a few light red bumps here and there that itched enough to drive me mad. Seems to be going away now. I have been using my gentle, all-natural facial cleanser on my head as well as my face and that seems to do the trick.

    {EDIT} Jules I just read your last post and sounds like we have the same thing. I only had a few bumps here and there, so I hadn't called my onc's office but did think about it. Surprisingly, I did that very thing. I used DH's Head & Shoulders and hydocortisone cream and got some relief. But I found the dandruff shampoo quickly dried out my scalp so I switched to my facial cleanser, at the suggestion of my hair stylist.

    I use Yes To Cucumbers all natural cleanser. I just wash my face and all the way up and over the noggin. I've done this every morning for the last 4 or 5 days and the bumps are fading, not itching. If the other stuff doesn't work, you could try it. I hope you get some relief - it drove me nuts! :)

  • pasmithx2
    pasmithx2 Member Posts: 224

    Happy Monday!



    We had a gorgeous spring day yesterday, but then it started snowing like crazy. Now it's raining and dreary. The snow is still on the ground but the temps are supposed to hit 15*C (59*F.)



    Lots of talk about hair. I'm at Day 13 and still am not seeing any shedding at all. Still, I think my hair follicles have shut down and the hair no longer has any life support. It looks miserable. I feel like I've had it tied back too tightly for too long.



    A friend asked why I didn't do it last week. I guess it's easy to say when it's not YOUR hair. I don't think she gets that one more day with hair is one less day being bald. And someone here pointed out that it is the external feature that people associate with cancer. Right now, no one knows I'm doing chemo even if my hair looks sad.



    I'm starting to obsess a bit. I keep running my fingers through it to see if I'm getting any amount of loose hair. As soon as I do, I will bite the bullet. Part of me just wants to get it over with. The other part of me is cheering the little guys to hang on to my head just a bit longer.

  • supersally
    supersally Member Posts: 158

    Pasmith - I'm right there with you girl!  I'm at day 18 and mine is coming out in chunks of 4-5 strands.  I am tentatively shaving in tomorrow.  I feel my hair texture has changed.  It's not as soft, more wiry than it used to be.  Perhaps I'm obsessing and it's in my head.  I am like you, running my finers over it every few minutes to see.  My scalp is itching again today, so I have a feeling it will be letting loose soon.  I thought I'd be happy to shave it and get it gone, and I will to an extent, but you are right.  One more day wtih it is one less day bald!  It reminds me of when my Corgi dogs are shedding and leave little puff balls of fur all over the floor.  I'm all set with wigs, hats, etc. but letting it hang on a little longer is my plan.

    Lilylady - glad your flowers are about to come out.  It really will brighten your mood to look out there and see all those happy spring flower faces.  That is weird that the liver weighs three pounds!  I have another weird trivia thing for you.  Did you know your uturus is about the size of your fist?  And it stretches out to hold a 9-10 lb. baby.  Crazy, I learned that one when I had mine removed 2 years ago.

    Jules and Michelle - sorry about the folliculitis thing.  I'm glad you shared on here.  That sounds like something I might get.  I didn't think of tea tree oil.  I already have some as I've heard to put it on your nails if you start having troubles with them from chemo.  So sorry to hear about your reaction this time, Michelle.  Strange that you didn't have one the first time and you had one this time.

    Kymn - hang in there, spring will come soon!

    BlueCowgirl and Lilylady - I'm going to check into the survivor buff thing.  I'm not sure where to find, but I'll google and see.  What did we ever do without Google?

    ugh, must go now, boss wants to meet.  Work gets in the way of life sometimes. Money mouth

  • cellomomof5
    cellomomof5 Member Posts: 49
    Lilylady - maybe we should start a "Gardeners with Breast Cancer" forum (or is there one already - I wouldn't be surprised! Wink)  We're way behind you here in New England... I have a few crocuses in bloom but tulips and daffodils are just poking through.  Still, it helps my state of mind more than just about anything to walk around outside, pull up a few dead leaves, and see what's growing.
  • Kymn
    Kymn Member Posts: 887

    AACCKKKK Hair is falling as I type I can feel it in my wig OMG time to pull out the straight razor tonight.Day 18 here

  • divinemrsm
    divinemrsm Member Posts: 6,613

    Blech!

    Still on the rebound from the 3rd chemo.  Had it Wed., which went okay, then on days 3 & 4 (Sat. and Sun.) I mostly slept.  My mouth gets numb, no food tastes good yet my body wants fed.  Today, Monday, I have about half the energy I think I should.  

    I also feel a bit more down in the dumps and not sure why. Perhaps cumulative effects of the whole shebang?  I had hoped to bounce back more easily since I was knowing what to expect.

  • Mauimama
    Mauimama Member Posts: 16

    Kymn,

    I feel your pain, sister!!!!  Mine is shedding bigtime...look like a mangy dog or something...it's itchy and even though I'm NOT excited about going bald, I'm really looking forward to it all being out because the itchiness is making me crazy.   At least it'll feel more physically comfortable after.  And I keep telling myself, IT'S TEMPORARY...you'll be bald for a while and then it will slowly start to grow back.  That gives me a degree of comfort knowing that it's really a short term loss for a long time gain.  

    But when I just read your post, I laughed out loud cause I was just in my bathroom, standing over the sink, going all over my head with the lint roller!!!!  If someone walked into my house right now and saw me, they'd scream bloody murder and run the other direction!    But it DOES help....I'm actually taking a walk to the local drug store to get another one and to pick up something to put on my scalp once the hair is all gone.  Amazing that we're all dealing with so much stuff that we never in a million years thought we'd have to endure....and we're finding the strength and courage and braveness to do it.   Just goes to show us that we have much more endurance and strength of spirit than we give ourselves credit for, because when we have to have it, we just dig deep in our well of strength, and there's more there for us.  Thank God a million times for the perserverance of the human spirit -- that's all I can say.   One day we will ALL look back on this time in our life with a full head of hair and renewed health and vigor and say "if I could go through that, I know I can go through anything."   I keep reminding myself "that which doesn't kill you makes you stronger"....

    Anyway, there's another lint-roller lady doing her thing here in the SF/Bay area....just had to share that with you~

    Aloha~

    Sharon ("Mauimama")

  • mdg
    mdg Member Posts: 1,468

    Just wanted you all to know my exchange surgery was scheduled for June! I am writing this on my phone because I just wanted to check in with all of you fine ladies while I was out and about today. I will write more later.

  • Kay_G
    Kay_G Member Posts: 1,914

    Just back from chemo # 2,  it went easier than #1.  I am losing power, so I can't say much.  I am at day 15 and saw lots of hair in the shower today.  And when I run my hands through it (which I can't seem to stop doing), they have quite a bit of hair on them.  I'm going to keep it for awhile though.  I didn't buy a wig.  I will type more later.  Have a great Monday everyone.

  • sweetangel
    sweetangel Member Posts: 38

    Happy Monday everyone, sometimes I get so entertained reading all your post that I forget to make one :-)...Lil lady your post always makes me smile, and love you all for being so wonderful.  

     Yay its been 6 days since my chemo, my nurse called me this morning asking me how am I doin, I said I am feelin better.  Asked her if the chemo seems to be working? bec. I don't feel SE....my appetite is still good, no nauseaous etc... I had first round of FEC....maybe the2nd round would be a lilhard on m? should i be worried? i hope its all working :(...

    Kymm sister, how are you? did you have your 2nd round of FEC? i see your hair is falling :(....yay, I am not looking forward shaving my head :(....I bought a wig already but not too sure if I really wanna wear it......i know i read somehwere in your post that you bought a nice beau beau scarf...where can I buy something like that? 

  • Huskerkkc
    Huskerkkc Member Posts: 471

    MARIA, Great news! Waiting anxiously for details!

    Kay, Sharon, PasSmith, Supersally, (hope I didn't miss anyone)...I am day two of the GI Jane look. Stayed home today (had Neulasta shot yesterday and learned lesson last time) but went to two appointments with wig. Blue, I actually changed wigs mid-drive cuz the one was too tight; headache gone! Was going to have it trimmed anyway. I waited until I saw no cars on the highway and hoped I got it on straight! Anyway, you'll know when you need to do what you need to do...scarves, wigs, topless. (Spoken from an expert after two whole days!)
    Will go back to school tomorrow with my new cuter, blonder, little longer hairdo and wait for all the reactions. Best to whatever you decide to do, whenever you decide to do it. YOUR BODY, YOUR CHOICE. YOUR TERMS.
  • Huskerkkc
    Huskerkkc Member Posts: 471

    Sorry, not sure why all the goofy "address" symbols are in there. Tried to edit but it doesn't show up there! Time for a quick nap. TTYL

  • jenn_h
    jenn_h Member Posts: 21
    Try this site for buffs..  http://www.sahalie.com  You can get the actual survivor buffs hrough the CBS website, but this other one is the actual maker of them I believe and they have all diff. colors and stuff...
  • supersally
    supersally Member Posts: 158

    Jenn_h - Thanks!  I'll check them out.

    Maria - were you the one recommending Coobie bras?  Does anyone here know if they provide adequate support with TE's?  Yeah for your exchange surgery!  You can have a good summer with your new girls!

  • Kay_G
    Kay_G Member Posts: 1,914

    Thanks for the link Jenn_h, I am going to check them out too.  Thanks Kristy for the encouragement re:  the "hair" issue.  I think as long as I can wear a baseball style hat and have a little hair coming out of it, I am going to keep it that way.  Also, given the comments about the itchiness and pain from stubble, I am not too keen on doing that.  I'll see how scraggily it looks.  Like you said, something we all have to do on our terms.  At least it lets me know the chemo is doing something.

    Song for today, Just Another Manic Monday by the Bangles:

    It's just another manic Monday
    I wish it was Sunday
    'Cause that's my funday
    My I don't have to runday
    It's just another manic Monday

    Good for you Maria with the surgery.  It pays to be the squeaky wheel.  As Lilylady says, something a lot of us don't really want to do, but time to get over that.

    My best to everyone.

  • Kymn
    Kymn Member Posts: 887

    Hi ladies, still itching here at work cant wait to get home and lint roll my head lol.Sharon so funny hey all of us going through the same thing, only we can laugh at one another. And I agree just all come out already so I dont have this darn ithcing anymore..was really hoping I could keep the GI Jane look oh well fryer tuck it is I guess. Husk(Kristy) too funny you swithcing wigs mid drive, I have to be careful when I adjust mine to dont want to cause an accident. Where I live it is soooo windy I am afraid I will chasing my wig down the street one day lol and I would share that with you girls but thats it hehe.

    Jenn i havent been to that website I will try it out.

    Hi Sweet Angel glad to see you made it through round 1 of FEC I have round 2 coming up on  thursday I will be sure to let you know how it goes. the beau beau scarves are at www.4women.com I actually have 5 of them now as some friends bought me some too. If you want to send me your addy I will mail you one and you can have it I dont need that many Smile

    I did buy some really cute earings today.I still need to find some cute hats that I like.

    Divine Mrs M I am so sorry to hear you feeling down today big HUGS for you I wish we could all be physically closer I would come over and just hold your hand.

    Hi Supersally hope you are having a great day.

    Have to run check back in later girls

    Hugs Kymn

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